A year (and a day) in the life of a wheat germaphobe

Welp, I made it (not that I have a choice…well, actually you always have a choice, but it the alternatives might not be conducive to prolonged life).  Dinner at the 100%-gluten-free Little Aussie Cafe & Bakery was the understandable highlight of the fanfare surrounding this particular little event.

The journey thus far has not been without its ups, downs, and teaching moments.  I thought I’d share a couple, because the more I tell my own story or describe my own situation, the more I realize I’m not alone, and the more people I see with relieved looks on their faces as they learn they’re not alone either.

(No particular order other than that which they visit my mind.)

1.  Going 100% gluten-free is harder than you think.  Gluten is everywhere.  Most of the American dietary staples use gluten-containing foods – bread, pasta, pizza, sandwiches, wraps, crepes, cake, cookies, crackers (even soda crackers), hamburgers (bun, and sometimes the beef, too, as a filler), spaghetti/lasagna, noodles, soup (as a thickener and in noodles), cereal, turkey stuffing, muffins, salad croutons, pop tarts, pancakes, waffles, flour tortillas, even Kit Kat bars.

There are entire grocery store aisles and restaurant menu sections you have to avoid.  Your options are often very limited.  What’s leftover is yummy, and shopping did just get simpler and more efficient, but sometimes it sucks anyway.

2.  Going 100% gluten-free is easier than you think.  Often, people ask me, “so what can you eat?”  More often than not, this question comes from overweight diabetics/pre-diabetics who simply cannot imagine going a day (or even a meal) without some kind of gluten-containing grain (usually wheat) who forgets about the healthy things like fruits, veggies, fish, and lean meats that you can still have.

3.  It’s easy to forget.  It’s old habit to reach for those chocolate chip cookies.  It’s easy to–oops–have some of that turkey with stuffing.  Or to forget that those mashed potatoes may have been thickened with wheat flour.  It’s easy to forget (or not even realize) that things like Twinkies and Kit Kat bars, believe it or not, have wheat flour in them.  Good thing my grandmother remembered my sister’s shellfish allergy and thought to ask me if I had any food allergies because I had forgotten to tell her!  (And this gifted lady makes desserts, pies, casseroles–galore!  Alas, all with wheat flour.  She was especially perplexed as to what to do with me when I came to visit.)

4.  I learned to offer up solutions; rather than focusing on what I couldn’t eat when describing my diet to people, I briefly listed foods I couldn’t eat but then quickly moved on to emphasize a good list of foods I could eat.  This put things into a much more optimistic perspective.

5.  There are yummy substitutes for practically everything.  Yes, as long as you’re not one of the unlucky souls who cross-react to gluten-free foods, there are lots of gluten-free grains out there that can be ground into flours that mimic wheat flour very well.  There are Oreo-like substitutes, chocolate chip cookies, cakes, pancakes, pizza crusts, sandwich bread (look for that which is not kept refrigerated/frozen!)

Of course, the object of the game is to get healthier, and any type of grain/starch stalls that progress, but sometimes it’s important to take baby steps.  Going gluten-free is a big enough step and that must be done in one big step (not baby steps), so in order to make things as easy as possible, take everything else in baby steps.

6.  This journey is accompanied by many emotional ups and downs.  Some days, it’s no big deal; I can adopt a care-free take-it-or-leave-it mindset.  Other foods are appetizing to me and grains and starches just seem heavy and lethargy-inducing (gluten-free or not).

On other days, though, the resentment sets in.  You simply want pizza or Mom’s chocolate chip cookies or Grandma’s apple pie or that yummy-smelling soup at Whole Foods (which all have wheat flour in them), or that Double-Stuff Oreo that’s not available in a gluten-free version.  Or maybe you’re hungry on the interstate and all there is is a McDonald’s and you really want a Big Mac.  And for a while, life sucks.

7.  “But you rarely ate pizza before” is hardly comforting.  The difference is (and this is key) is that you had a choice before, and now that choice has been made for you…forever.  It’s not that I ate a shit-ton of Big Macs, Double-Stuffed Oreos or pizza before, but the fact is, I could voluntarily make that decision for myself.

Now?  That decision has been made for me, for the rest of my life.  If I “cheat”, I’m only irrevocably destroying my nervous system.  It’s like a recovering alcoholic who can never enjoy a beer with his friends again, unless he wants to lose his wife and kids.

8.  Gluten-Flam (and other DPP-IV-based supplements) is not a get-out-of-jail-free card.  Gluten-Flam is a wonderful product put out by Apex Energetics and it can be a little lifesaver-in-a-capsule when at risk for a minor gluten exposure.

However, taking it does not give you cart blanche to go have a PB&J on whole wheat bread.  It’s for minor exposures–you know, when you order meat and veggies in a restaurant but they’re cooked on the same grill that also toasts buns for hamburgers.  Or they use a trace of gluten-derived flavor/spice on that Spanish rice at the Mexican restaurant.  That’s what Gluten-Flam is for.  I learned that the hard way.

9.  The hidden sources of gluten are nearly infinite.  Lipstick, cigarette filters (I don’t smoke or wear any makeup, but I mention this for those who do).  It’s in soups, shampoo, tea bags, envelop glue, you name it.  Wheat flour is often used to dust conveyor belts at food processing companies.  Since it’s not an official ingredient, these companies aren’t required to list it on the label (nor would they think to do so).

Result: hidden, undisclosed contamination, and potential reaction.  For this reason, eating away from home or eating packaged/processed foods is akin to walking in a minefield.  You never know when your best-laid plans will blow up in your face.

10.  The best currently-available lab testing measures for a single gene and two gliadin subtypes (alpha and beta).  There are many more of each that these labs don’t commonly test for yet, so there are lots of false negative results.

11.  You simply cannot go through life without reading ingredient labels – unless you’re totally awesome and you don’t eat food with ingredient labels (i.e. you eat natural, unprocessed whole foods, cooked from scratch–some mentally dense people got confused on why label-free food was awesome when I posted this on Andrew Weil MD’s Facebook page).

12.  Gluten-free people get screwed because gluten-free food is a niche market with a relatively inelastic demand.  This often translates to small packages of overpriced food.  Gluten-free people often can’t shop the cheaper bulk bins at stores because of the risk of reaction to cross-contamination.

There are lots of small gluten-free food companies trying to get their names out there, but they all offer the same: limited product lines of tiny quantities for lots of money (not to mention shipping, if you order it by mail/internet) with other questionable ingredients.  (Recommendation: use gluten-free packaged food as a temporary transition to unprocessed whole foods only.  After all, you want to get healthier, right?)

13.  “Gluten-free” doesn’t automatically mean safe.  You may encounter cross-contamination.  You may develop cross-reactions to gluten-free grains/other gluten-free foods.  And last but not least, many gluten-free foods still contain neurotoxic flavor enhancers that throw the nervous system into a tizzy that is almost as bad as ingesting gluten.  Although those neurotoxins don’t usually contain gluten (and can thus be found in foods in the gluten-free aisles at the grocery store), they set off reactions that hit gluten-reactive people especially hard.

14.  Gluten-free foods are harder to find.  If you live in a rural area with small grocery stores, forget it.  Stick to the produce – meat, veggies, fruits….that’s about it.  You can do some nuts and seeds from the bulk bins if you wash them thoroughly.

15.  Gluten reactions last up to 6 months.  That’s right – that single salad crouton you accidentally ate can set off chain reactions in your body (immune, endocrine, and nervous systems) that can have devastating effects for 6 months before your body clears them effectively.

16.  After going gluten-free, you’ll probably find you react to other foods.  These reactions aren’t new, but your body was too weak from all the gluten assault to react to other foods before.  As you relieve your body’s stress and your body has a chance to rebuild itself, it now has the energy to launch its attack against other foods you may not have previously realized were a problem.  It can be paradoxical; in some respects, as you get better, it’s possible to feel worse (which is temporary).

17.  More and more restaurants have gluten-free menus!  Some are chains and some are local.  You simply have to ask.  Pei Wei (Asian/Chinese chain), Outback Steakhouse, Paloma Blanca (local Mexican), even Carrabas (!) (Italian chain – incredibly surprising that they’d have a GF menu, considering they’re an Italian restaurant), and many more.  If you’re especially sensitive, don’t forget to ask if they cook GF food on a separate, designated grill.

18.  If you have to be gluten-free, there’s no better time than now.  Exploding awareness has spawned dozens of gluten-free food companies, gluten-free menus, gluten-free support groups, gluten-free cookbooks, gluten-free cooking classes, improved lab testing, testing for the genes that lead to gluten-intolerance, increased research on the effects of gluten and the diseases it causes/exacerbates/contributes to, and so much more.  With so many people (hundreds every single day) finding out that they can no longer have gluten, you’ve never been in better company with so many peers in the exact same situation as you.  You’ve never had so much veteran support.  No longer is it some mysterious fringe disease that leaves you isolated.

19.  Gluten reactivity has proven links to over 200 diseases/conditions (and even more suspected links currently being researched).  Included in these links are: ALS (Lou Gehrig’s Disease, Hashimoto’s (autoimmune thyroid) Disease, Grave’s Disease, adult-onset Diabetes Type 1, Pernicious Anemia, Alopecia Areata (patchy hair loss), bipolar disorder, clinical depression, irritability, schizophrenia, vitamin/mineral deficiencies, protein/essential fatty acid deficiencies, joint pain, rheumatoid arthritis, Irritable Bowel Syndrome/Disease, Psoriasis, Crohn’s, Ulcerative Colitis, eczema, night vision loss, cerebellar ataxia, motor/muscle weakness, vertigo/dizziness, migraine headaches, increased sensitivity to pain, brain fog, memory loss, chronic fatigue, iron-deficiency anemia, afternoon energy crash, adrenal fatigue, ADD/ADHD, autism spectrum disorders, peripheral neuropathies, and soooo much more.

If you have any health issue you can’t get to the bottom of, or your medical doctor is clueless, or if your chiropractic adjustments pop right back out of place too soon, and you haven’t been tested, you need to get tested yesterday and find out once and for all.

As challenging as gluten-free life is, we wouldn’t trade it for the world – we’re simply thankful we know a huge answer to our problem and can prevent any further damage.  Most of us suffered mysterious symptoms for years (sometimes decades) and nobody could figure out what was wrong.  No one knew what the problem was.  Knowing is half the battle.

The other half is the day-to-day coping.  Adjusting to a 100% GF lifestyle is a longer process than people realize and it has its good days and its bad days, but the overwhelming emotion (for me at least) is gratitude – thank you Universe for showing me what’s wrong so I can make a change and get on with the life I am supposed to lead.

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