My Journey With Gluten Sensitivity

For years now I’ve made no secret of the fact that I’m an allergy mom and wife.  Both my business and personal musings have been about life after our daughters were diagnosed first with milk allergies and then peanuts, tree nuts, kiwis and chickpeas on top of my husband’s allergies to shrimp and clams.  I never envisioned that I would also become a contributor to the list of foods my family needs to avoid.  And while my issues are definitely not life threatening, they are life changing.  I have become lactose intolerant and gluten sensitive.

I’ve been quieter about my own dietary issues for a couple of reasons.  First is because there are just so many people who have far greater problems than my family or I have.  Second is that there is so much backlash about the fad of gluten free (and yes, there are some of those out there we’ve all met), which always negates the very real medical issue of Celiac Disease, that I’m getting rather tired of explaining myself.  Plus, let’s face it, the journey to gluten sensitivity and lactose intolerance is full of lovely bodily functions that really are a conversation killer.

Given you, my audience, “get” this far more than the public at large, I’d like to share my journey in the hopes that it may help anyone else who’s struggling with similar concerns.  I’d also suggest reading this article that provides a superb overview of the scientific research involved:  http://www.sciencebasedmedicine.org/a-balanced-look-at-gluten-sensitivity/

Although I thought my issues began in my 30s,  I now realize that there were signs years prior to that.  I’d say that my 20’s were really the beginning of when I started to bring up recurring issues to my doctor but with no major patterns it was hard to determine what the cause might be.  After various events where I had to rush home from restaurants to my own bathroom or the time I went to the hospital because my husband and I thought I had appendicitis, my doctor thought I had either Irritable Bowel Syndrome (IBS) or diverticulosis.  Since both these and ileitis and colitis run in my family, it made sense.  I was to make sure I ate healthfully and on a regular basis with an emphasis on fiber.  Given this was the 90s when low fat, high carb was in, I went to town on “healthy” high fiber whole wheat products like bagels and bread.

The problems continued but I just learned to cope.  I learned that I could no longer have fettucini alfredo at my favorite restaurants unless I wanted a quick and painful dash home with the fear of not making it to my bathroom in time.  Essentially, I learned never to combine dairy products and pasta.  I stopped drinking any milk with my meals (a staple since my childhood) because of how painfully bloated I’d become and the embarrassment it would bring later.  And I bought mega sized amounts of ibuprofen and migraine medications to try to cope with both the severe headaches I’d experience daily and the migraines 3-4 times monthly.  I became iron deficient so was prescribed iron supplements.  I tried acupuncture, the chiropractor, physiotherapy, a dietitian and more to no avail.  I continually gained weight and exercise programs were often derailed by fatigue.  Finally, 5 years ago, I had the blood test for Celiac Disease – it was negative and I was almost disappointed.  I wouldn’t wish Celiac Disease on anyone but I just wanted an answer.

And finally, everything I was trying wasn’t working anymore.  I’d have gastrointestinal problems swinging back and forth between diarrhea and constipation no matter what I ate or in what combinations.  It was time to try something different so I decided that starting on April 1, 2013, I would completely take out the 2 foods that I thought were the biggest culprits:  gluten and dairy.  Within a week, my husband noticed a difference in my energy level, my mood and the clearness of my eyes.  My daily headaches improved, I stopped needing iron supplements, I’ve had only 2 migraines since I changed my diet and I no longer need to dash home from eating out with friends.  While some people say that they lose weight, I’m sad to report that I was not the beneficiary of any such miracle – it appears one actually DOES have to exercise and eat less for the pounds to drop off.

I found that I was able to add back in a little bit of dairy after about 6 months but never milk, only low lactose products like hard cheese unless I want to take a lactase enzyme.  I was so pleased because I found cheese far harder to live without than gluten and while I tried some dairy free substitutes, I was never a big fan.

And then it began again about 8 months after I thought I’d solved everything.  How could this be?  I was really careful, knew how to read labels well and was eating really healthfully with very few processed products.  In particular, I started having stomach pain and bloating from the organic soy milk lattes or tea that I had once each morning.  I researched and came up with the FODMAPS (also discussed in the link provided above) approach so once again I removed more from my diet for 2 months as I ate the low FODMAPS way.  At the end of that 2 months, I was lucky enough to be at the Calgary Gluten Free Expo and caught a talk from dietitian Desiree Nielson (http://desireerd.com/), who mentioned both probiotics and FODMAPS for the gluten sensitive.  She mentioned that FODMAPS is not meant to be a lifelong approach but an attempt to rebalance the gastrointestinal and immune systems so adding back in foods slowly and carefully is a good approach.  I did that and have had no continued issues, including being able to enjoy soy milk again although I must remain gluten and lactose free.

And an added bonus?  My eldest daughter went on a gluten free and dairy free diet with me for 1 week when we were traveling together.  Lo and behold, her psoriasis (an autoimmune disease) cleared up completely.  She went back on a gluten filled diet when we returned and the psoriasis came back.  She’s now psoriasis free on a gluten free diet unless she cheats.  And at my family reunion this summer, I discovered my 28 year old cousin with psoriasis who experiences the exact same thing.

Do I have a specific medical diagnosis?  No.  For many, that means my need to be gluten free is on par with all of the faddists out there.  Having been part of many past fads, (like that low fat, high carb diet or neon sunglasses in the 80s), it is nothing like a fad for me.  The difficulty of monitoring for gluten and dairy in addition to all of the other food allergens my family needs to avoid is not something I do for fun.  The people who know and love me do not question that I am far healthier in body and spirit off of gluten and dairy.  I don’t ever want to go back to the way I felt before and wouldn’t wish it on anyone.

There is only one thing that I did through this journey which I would advise you to avoid; I stopped talking to my doctor.  Because I felt that I was becoming a broken record when I went for annual checkups, I just stopped reporting the various issues.  When I moved to a new province and got a new doctor, I didn’t start putting it on my list again either.  My grandmother was a terrible hypochondriac and I just knew that I didn’t want to be perceived as that and besides, it was nothing like my family’s life threatening allergies – I could cope right?  Yup, right up until I couldn’t anymore.

So if anything I’ve told you about in my journey to a gluten free and lactose free diet strikes a chord with you, talk to your trusted medical professional.  And don’t give up – keep pushing until you’re feeling better.  Maybe you’ll get there in far less time than I did and it will be worth all of the persistence.

Alana Elliott is the Founder and President of Libre Naturals (formerly Nonuttin’ Foods), a gluten free and allergy friendly food company she founded in response to her family’s many food allergies and immune disorders.  Please check out Libre Naturals at:  www.librenaturals.com