Debi Smith (left) with Shirley Braden

Today I have the pleasure of bringing you my new friend, Debi Smith, who has a great blog Hunter’s Lyonesse. The more I talk to her, the more I find out all we have in common, like our love for the band Lovehammers (you may remember their lead singer, Marty Casey, from the show Rockstar INXS). We also have in common that we are both “cheerleaders”, as Debi put it, for the Gluten-Free community. Besides being a great blogger, if there is a cause or product or recipe she believes in, Debi is quick to let everyone know just how awesome it is and the person who is behind it.  It has been great getting to know her better since we first met at the Gluten-Free and Allergen-Free Expo last month and I look forward to seeing her more in the future. It is now with pleasure, that I bring you Debi Smith….

I had the pleasure of meeting Andrea at the Gluten & Allergy-Free Expo in April. The funny thing is we were at all the same places with all the same people all weekend long, but we never really got to talk to each other until it was all said and done.

We have a similar story.   All of us in this little blogosphere share it.  A common thread.  We all hit rock bottom and struggled (or continue to struggle) back on our feet to regain the total health we were deprived of for so long thanks to that pesky gluten protein.   Rock bottom is where you find your true self.  You can either stay there and never try to get better or you can put on your climbing gear and take charge of your health…and take back your life.  When we come out on the winning end we realize we are stronger than we knew.  We didn’t give up.  Or if we did give up, we realized it wasn’t worth continuing to do nothing. Continue reading →

As I fought my way back to health, I used all the advocacy skills I developed in the years working in mental health.  What I got was excellent service from all the doctors I saw.  I was a fairly good advocate for myself before that and a damn good one for others.  When you find yourself on Death’s doorstep, you’ll do whatever it takes to cheat Death.  That is when you discover you can do so much more than you thought you could do.  I asked questions.  I pressed for answers.  I would not accept anything less than quality care.  All while I felt like my life was slowly being sucked out of me.  I somehow had the tenacity to keep pushing.

Long story short (longer story – My Journey Back to Healthy Living Longer story starts with Catching Up With The Joneses), I continued to get worse (if I wasn’t at work, I was in bed) after being diagnosed with Hypothyroidism.   Medical test after medical test showed nothing.  My doctor and the specialists he sent me to were stumped.  It was my Naturopath that discovered my Synthroid was making me sick.  I started to get better off the Synthroid, but something was still missing.  My friend made the gluten connection for me.  I went off gluten for a few weeks after doing some research and then had a reaction when I added it back in.  If you are reading this and are not gluten-free, but suspect you might need to go gluten-free, get tested first!   Don’t do it backwards like I did.

Advocacy is something that never stops once you’ve found yourself in this gluten-free life.  You have to keep blazing a trail every day.  You have to advocate for yourself still with doctors, dentists, friends, family, restaurants, food manufacturers, legislators.  People are still unaware of what it truly means to be gluten-free, even some who are gluten-free.  And face it, doctor’s that we trusted with our health and our lives do not always have the answers.  It’s okay to admit this to yourself.  It’s the truth.  Doctor’s don’t always have the answer.  The doctor who diagnosed me with Hypothyroidism was at a loss for what was making me sicker even if my labs were returning normal.  He would say to me, “I don’t know.”  Somehow, even if it was frustrating, it was refreshing that he could acknowledge his limits.

Even before I knew I needed to be gluten-free, I was changing the trail I was blazing.  Whole foods.  Natural foods that we were meant to eat, that really communicate effectively with our bodies.  Processed foods just confuse our bodies and gets us in the mess we find ourselves in at the doctor’s office.  I was telling everyone and anyone about getting rid of processed foods.  Much to the dismay of some of my friends.  Yes, I turned into the Food Nazi.  In my defense, I was so passionate about advocating for my own health that it spilled over and I wanted my friends to feel the same improved health I was experiencing.

I repeatedly told clients (and sometimes parents) that if they need something for themselves, they need to speak up and say it or do it because no one can read their minds.  Sometimes I would have to repeat this for them many times day after day before it finally clicked.  It might be the same for you especially if you are at that rocky bottom.  You’re stuck there until you decide to move and the only way to go is up.

Once you are moving up, you are in what we call in mental health, recovery.  You no longer define yourself as your diagnosis.  Your diagnosis just happens to be part of your life.  I am not Hypothyroid.  I have Hypothyroidism.  I am not gluten intolerant.  I have gluten intolerance.  My body cannot tolerate gluten.  It may define what I can and can’t eat, but it doesn’t define me rule my life.  It certainly seemed so 15 months ago, but it was short lived.

I was already eating a lot less gluten when I did the gluten-free trial and it was not as difficult for me to cut it out when the time came as it is for so many others who enter into this change of diet without a clue.  I did research.  Something I tend to do when making changes in my life.  It’s just one of my self-advocacy strategies.  One that my doctors always appreciated.  I already knew about gluten and Celiac through 3 of my friends who are diagnosed with it.  I just needed more information than I already had.

Empower yourself if you haven’t done so already.  Get more information.  Don’t take no for an answer.  Speak up.  Do.  You have the power over your health and your life.  You know yourself and your body better than anyone else.  You are the one living your life.  You are your own best advocate right now and for the rest of your life.  No one else is going to pick up the torch and blaze your trail for you, but YOU.

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Today I bring you Laura Suskin and her son Max. I recently met Laura through the Gluten Intolerance Group in the Greater Chicago area. Laura is one of the Branch Managers for the whole chapter. She also has a great blog site at Gluten Free Lake County, Illinois.  She has really dove into the gluten-free world due to her son having Celiac Disease and I can’t wait to get to know her better, she is really a sweet lady.

With that being said, I now bring you Laura Suskin…..

Thanks so much to Andrea for asking me to take on a letter in her alphabet blogging series!  I am honored to represent letter L!  I am Laura Suskin, my son Max was diagnosed on June 2, 2009 with celiac disease.  At that time he was 18 months old.  He now is a very healthy 3 year old.  Over the past 2 years I have made myself into an expert on Max living GF.  As a GF Mom, I have involved myself with the Gluten Intolerance Group of North America and am currently the branch manager for the Greater Chicago chapters.  You can check out the GIG website at www.chicagoglutenfree.com or my own blog at www.glutenfreelakecountyillinois.blogspot.com. Continue reading →

Max

Last week I met a mom who had just learned of her daughter’s celiac disease.  I remember that day for myself so clearly.  I put together this list of the top 10 things that I wish I had known then and I am glad to know now.

1)      Not the end of the world:  Although it may seem that way, gluten intolerance is not the end of the world, nor is it the worst thing that could happen to your child.

2)      Use the Internet:  There are so many blogs and websites full of information.  I find more helpful and practical information online than I do from the registered dieticians and doctors.  Find the bloggers who write the recipes and tips that you need and bookmark those sites.

3)      Talking & disclosing:  Tell everyone you know that your child is now gluten free.  I cannot count the number of times that a casual acquaintance has contacted me to notify me of some gluten free thing that they noticed.  At this point, most of what I get told I already know, but there are those awesome hidden gems that I just love learning about!  Find a support group to join; we know so many things we can teach you!

4) Amazon.com: Gluten free eating can get very expensive.  I buy a lot of dry goods online.  I regularly buy Pamela’s cake mix & cornbread mix, Glutino’s pretzels, and Bob’s Red Mill AP flour & pizza crust mix from Amazon.com. The prices cannot be beat and shipping is free with an order over $25.

5)      Baking:  If you have a young child, you will need to learn how to bake GF.   There are 2 methods to GF baking—1^st is that you buy many different types of GF flours and make a blend yourself.  This is expensive and time consuming.  The 2^nd method is to buy an all-purpose GF flour blend (I like Better Batter) and you can substitute this product into most conventional recipes.  This is less expensive and you will end up with a familiar tasting and looking product.  As an aside, beware that when you bake with bean flours that the raw batter will taste awful!  If you want to lick the bowl with your kids, stick with the AP GF flour blend.

6) Parties: You will be bringing food to birthday parties for your child from now on.  Take a cake decorating class at your nearest craft store and learn how to make your child a fabulous looking cupcake.  It is less sad when your child has something as fun looking as the forbidden birthday cake.  Ask what else is being served at the party so that you can duplicate the other food.  And have a stash of candy in your bag to replace goody bag loot as needed.  IF a host does anything to accommodate your child, praise and thank them greatly.  It is good public relations on behalf of the GF community.

7) Plan ahead: You cannot just grab a bite to eat somewhere convenient.  Meals out need to be researched in advance.   Many restaurants can offer a GF option that may be OK for an adult but that your child will not eat.  Call ahead and check online.  Ask the hostess to not bring the breadbasket to your table to avoid any losses.  Bring your own box of breadsticks to fill the gaps.  Once you find some places that work stick with them until you feel more comfortable trying a new GF friendly restaurant.

8) Have a stash: Always have some liked snacks with you.  I keep some in my diaper bag and my glove box.  I don’t ever want to be caught in an emergency situation where I have to scramble to find my child something to eat.

9) Expect to be surprised: Just as I mentioned the well-intentioned people in numbers 3 & 8 above, know that you will be pleasantly surprised by the people who will go out of their way to accommodate your child.   Completely on your own you will find a restaurant very eager to keep your child safe.  For me, these discoveries are always exciting and I am sure to offer up grateful thanks afterward.  It certainly helps if your child is very cute!

10) Advocate like your child’s life depends on it: You are the best advocate for your child.  When Max is older I will teach him to assert himself, question menus, and keep himself safe.  Until that day comes, it is my number one job in any dining situation to keep him safe.  That means that certain restaurants we will not eat at (sometimes we lose out on an invite because of it) because I do not find that the staff has a clear understanding of all GF entails.  It also means that I stopped buying Trix cereal for Max, despite how much he loved eating it.  And although the first 3-4 weeks there was crying I do not regret my decision.  It means that since Frito-Lay revised their GF product list that I am seriously considering banning Max’s very favorite honey BBQ corn chips.  All very difficult decisions, but it is my responsibility to make decisions for my child.  Since there is some ambiguity about which products are actually GF due to the non-existent labeling laws I need to do my research, ask around, and remain diligent at all times.

So that’s my top 10…  I admit that there are moments when I feel so sad for what we have lost by Max’s diagnosis.  I have great hope that a treatment or cure for celiac disease will be found during Max’s lifetime.  I intend to keep him safe and healthy until he is old enough to manage his restrictions himself.  At that point, I will teach him all I have learned and feel confident that he will continue to live a healthy and safe life.

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