Gus’s Story
“We live in an American culture that places unreasonable value on height.” So said our pediatrician after I questioned the dramatic decrease in the rate of Gus’s growth starting at the age of 4.
When he was born, Gus was in the 80th percentile for height and weight. By the time he was diagnosed at 6 years old with Celiac Disease and Type 1 Diabetes, his height didn’t even register on the scale for his age. OK, my Granny Polly was 5’ tall, but Gus’s grandmothers were both tall. His grandfathers are 6’3” and 6’4”. His parents are tall, and at the time his brothers were in the 99% for height. When the endocrinologist assigned to treat Gus’s Diabetes met his brothers he ordered a batch of other tests. His new patient was simply too small for there not to be something else going on.
Celiac Disease has been called the “great pretender” because its symptoms can parade as so many things. In Gus’s case it was “failure to thrive.” Since his diagnosis in 1998, I’ve met children and adults who’s Celiac Disease has presented itself as gastrointestinal complaints, acne, poor teeth, depression, Attention Deficit Disorder, chronic fatigue syndrome, acute joint pain, even in one case, skewed blood work that imitated cancer; for three years oncologists couldn’t figure out what kind of “cancer” this boy had. When he tested positive for Celiac Disease and adopted a strict gluten-free diet his “cancer” symptoms vanished.
I’m not a doctor, and I don’t suggest that a gluten-free diet is the answer to all or even most medical complaints. I can tell you Gus is almost 5’10”, a three-season athlete who has excelled at soccer, ice hockey, and lacrosse and is now playing Ultimate Frisbee and hockey at Stanford. He went to The Island School for a semester – where he earned an advanced scuba certification – http://www.islandschool.org/ – after which he transferred to boarding school. His commitment to maintaining a gluten-free diet has been powered by a desire to grow, to be as tall as his brothers. In 14 years he’s cheated (knowingly) once.
All along the way we have worked to make his culinary experiences as similar to his peers as possible. Gus has been an enthusiastic ambassador and advocate for gluten-free cooking and eating, sharing food and recipes with friends and family whether or not they eat a GF diet. I give a lot of credit to the faculty and kitchen staff at Breakwater School, Portland, ME, North Yarmouth Academy, Yarmouth, ME, The Island School, Eleuthera, Deerfield Academy, Deerfield, MA, and Stanford University for consistently working to figure out how to supply a GF version of whatever was/is being offered at school.
My Story
I grew up in Palo Alto, CA. My parents had five children under the age of 7; unexpectedly the “4th” was twins. As the oldest, I learned to help in the kitchen at an early age. In the 1970s my dad became the buyer of wines, liquors, and gourmet foods for Macy’s, a job that meant worldwide travel for… wines, liquors, and gourmet foods. We were often taste testers, once sampling chocolate chip cookies made by tall man named Amos.
At about the same time a young mom named Mrs. Field started selling her outstanding cookies from a cart at a communal retail space on University Avenue. Her stall was staffed from 11 a.m. until “Sold Out.” After tasting her cookies one of my culinary goals was to recreate Mrs. Field’s “secret” recipe using the Toll House recipe as a base. When Gus was diagnosed with Celiac Disease the goal became to do it gluten free. Happily, our boys and their friends were willing to eat any number of failed batches.
The boys are grown and I ended my commercial baking venture, but because I love to cook, I’m keeping on keeping on, writing it down for Gus…and for you and your friends and families.
I LOVE your site! I wish I had found this when I went gluten free. All of your recipes look fab.
xoxo,
Ashley @ The Preppy RUnner
Pam- good to see you the other day! I love the blog.
Laura H.
We’ve been gluten free for 3 months now and have seen dramatic changes in both of our girls 5yr and 2yr. I’ve been rabidly collecting recipes and testing out different flours and techniques as we make the transition. I’m looking forward to trying some of yours! Thanks.
This story and your site are so inspiring. Even though I’m not GF I do try to eat healthy and organic, and all these recipes fit the bill and look delicious!
Lovely story. I just recently found out that I am allergic to wheat so I am slowly trying to be gluten free. My husband is a big bread eater though and was advised by his doctor to stay away from rice. So we are trying to balance our meals around that. Good luck!!!!
Thanks for stopping by my site, so I could come visit yours!
I’m not ‘gluten free’ but look forward to trying your recipes. I found out about the dangers of phyatic acid and enzyme inhibitors in grains, lentils and beans around 2006 and once I started soaking/sprouting/fermenting the foods that used to cause us issues, ceased too – – however, I do so love learning new recipes and I’m excited to try your roasted squash soup, as none and I mean none of the squash or pumpkin soups I’ve ever made have turned out very good!
Beautifully designed site and look forward to seeing your recipes in my reader!
Thanks for finding me, I’ve just discovered I have a wheat intolerance, so I look forward to reading more of your blog.
Love your story, and looking forward to receiving updates!!!
Thanks for stopping by my blog, since I’m just beginning to bake and I’d rather be healthier, your blog fits right into my life changes! Thanks !
Love your story Pam! So inspiring. Thanks for stopping by my blog. I look forward in learning more about delicious gluten-free foods from your blog!
Powerful journey! And what a good momma! Thanks for following my blog. -Kat
Thank you so much for stopping by my blog and for the follow. Your recipes are amazing. My daughter now 9 1/2 became severely allergic to wheat/ gluten, nuts, sesame and a whole range of different foods, when she was only 6 months old. I experiment a lot because of her and as a result the whole family tries to be gluten free most of the time. With wheat being so hybridized here in the US, it makes sense to me to just try other alternatives. I cook a lot but somehow never really blog about it, I think I should start to add some of my recipes too 🙂
So glad that you found my blog, which means in turn that I have found yours. Great recipes and a lovely philosophy. I can see that my girls are going to enjoy my experimentation!
Thanks for following my blog! I’m looking forward to reading your posts, too. You are doing so many people a great service by writing this. http://ohtheplaceswesee.com
My daughter has to eat gluten free foods, so nice to have found your blog!
Heyy!
I think your blog is pretty AWESOME and have nominated you for the Super Sweet Blogging Award! For rules/info, visit: http://lifeasaculinarygirl.wordpress.com/2013/02/16/what-a-sweet-surprise-valentines-day-highlights-and-super-sweet-blogging-award/
It is not mandatory, so you can participate if you would like. Congrats!
Powerful story! Inspiring and lovely. Food looks great! Right now I am doing a yang enhancing diet and no wheat. It has been great, lots of energy and a clear mind! Keep it up!
Thank you for finding and liking my blog. Yours is beautiful, really beautiful. And what a message, and what food!
Thanks for stopping by for a visit to our blog. I have forwarded your site to our friends, who have gone g/f for the last 4 months. I’m sure they will learn much! Take care.
Thank you for following my blog. I too have a boy named Gus! We are currently testing him for Lactose Intolerance, as he is always complaining of stomach aches. Maybe we should think about wheat as well. I look forward to reading your posts.
Lucy
Awesome! Thank you for following me on my new blog, I especially resonate with yours as I was diagnosed with celiacs almost 5 years ago when I was pregnant with my third. I had struggled for so many years. So far none of my kids have celiacs but I need recipes to keep everyone happy, and so I’m not cooking 3 separate suppers!
Brianna @chaoticbirdsnest
Thank you for joining me on my journey! I’m honored to have you follow along. I’ll be back to check out your recipes! Have a wonderful day! 🙂
Hey there! I’m so glad you liked my “They Say it’s Vegetarian, But…” post. I also noticed you just started following my blog – welcome! Anyway, I wanted to check out your blog and say, “Hi.” Great “about page.” I enjoyed reading your story. By the way, I’ll never ever forget the first time I tasted a Mrs. Fields cookie! Celeste:)
Hey! I just nominated you for The Beautiful Blogger Award! You deserve it 🙂
You’ve been nominated for the Super Sweet Blogger Award!
http://teawitherika.wordpress.com/2013/03/09/award-cake-perfection/
Congratulations!
What an inspiring story! Your son is so lucky to have so much support. It’s awesome parents like you that help kids develop good food-intolerance habits as they grow up. Thanks for the follow on my blog! I love the online community of fellow gluten-freers on here. Is truly amazing!
Thank you for visiting my blog! I truly appreciate it. I’m actually really excited to learn more about gluten-free recipes and products through your posts!
Your story really touched my heart. With your permission I would like to have my web designer add a link to put your blog name and gluten free recipes on my website and hope you will put a link to my site mentioning my GF chocolates
Want to try the chocolates and have some sent to Gus. He won’t be back on campus for a couple of weeks (singing in South Africa!) so I’ll go on-line to order when he’s back at school. Thanks for your support – permission to share the recipes any where any time! Our goal is to provide information and encouragement!
Your story has touched my heart. This may be a duplicate comment but I am an aged newbie.
Thanks so much for your follow today. I am a (mostly) gluten free girl so can’t wait to follow and see your recipes. Looks great from the peek I took so far!
Thank you so much for stopping by my blog and for the follow. Your story is really inspiring. Our diet has a large intake of rice, but I am trying to cut back on it for my family and adopt this more healthier approach. I would love to try your recipes sometime soon 🙂
Thanks for checking out my blog glutenfreegus! Your story rocks! I’m on a sugar free cleanse for a couple of months but I definitely need to try some of your desserts when I’m done! 🙂
Love it! Thanks for checking out my blog, weekenddessert!
Your story is inspiring and I love the mention of Mrs Fields, we have one in our local mall and since chocolate chip cookies are my all-time favorite dessert, it is really hard to pass up! However, I just recently became aware that gluten has been the cause of my gastrointestinal issues and the migraines I have had my whole life, so even though it seems overwhelming now to completely change, I know I have to do it.
Please try making “Gus’s Chocolate Chip Cookies”, the ones for which we became (famous) as I tried to recreate the Mrs. Field’s experience with GF flours. The recipe was posted a week ago (sub plot: “Dog Food Sandwich Solution”.) You’ll be really happy!! Remember to allow an hour (or more) for the dough to (mature) in the refrigerator. Good luck!
~ Gus’s Mom
Thanks! I will look into it!
“A balanced diet is a cookie in each hand”. 😉
Hey I hope you don’t mind, but I nominated you for the “Inspiring Blogger” award, I think it is great how dedicated your are to Gus’ health and the health of others with celiacs.
http://homesteadroots.wordpress.com/2013/04/01/inspiring-blogger-nomination/
your story is inspiring and I’m encouraged as a dietitian to keep challenging clients with similar symptoms to adopt a gluten free diet. I look forward to trying your recipes!
Thanks so much for stopping by and following my blog! I’m so glad I found your blog – it’s filled with so many wonderful recipes (I’m already excited about the avocado and sweet potato sandwich!) and your story is so inspirational. I’ve started to experiment more and more with gluten free recipes. At first, I was doing it for the benefit of others but as I’ve started to read a little bit about the associations between gluten and certain illnesses, I’ve been leaning in a gluten free direction myself as well! It’s great to find a blog with so many wonderful gluten free recipes and I’m looking forward to reading many more!
Kristin
Hi..I like your beautiful blog and I have nominated your for “The Versatile Blogger Award”. Please visit http://jenyjohn.wordpress.com/2013/04/10/the-versatile-blogger-award/
Hi there, thanks for checking out my blog and following. i’ve just started blogging and you’re first fellow blogger following me so i’m returning the favor and looking forward to learning all I can from you about the best ways to go gf. Hope I can help my ‘challengees’ to do the same. Coach Andy
What a lovely idea for a blog! My cousin has a severe allergy to dairy and soya, so I can understand the frustrations and restrictions that arise from allergies. Having a ‘freefrom’ selection of baked goods is definitely on the cards at Bee’s!
I’m so glad you stopped by my blog…my husband, my youngest daughter and my oldest granddaughter all have Celic’s Disease so your blog is perfect for my cooking and well, just every day life!
Linda
http://coloradofarmlife.wordpress.com
http://deltacountyhistoricalsociety.wordpress.com
Hi. I’m loving your blog, so I have nominated you for the Liebster Award. See it at: http://bakingbohemian.wordpress.com/2013/06/09/the-liebster-award/. Keep up those wonderful recipes! regards, jen
Thanks for following me – I hope you enjoy some of my recipes. I’ll be sure to check out yours xx
Your story is pretty amazing and inspiring. I have never tried a gluten free diet but I’ve always loved eating healthy and have wanted to learn more about eating gluten free. Thanks and hope you continue to share.
Dear Ms. GFG– Whether you know it or not, you are inspiring me to get into the kitchen and tackle GF baking. You are an excellent resource. Thank yo so much for being here.
What a wonderful story and a great blog!
Hello,
I trust this message finds you well.
I’ve just had the fortune of being awarded the Liebster Award blogs and as part of the protocol I’ve nominated/awarded 9 other blogs as well.
The Liebster Award is a process where a blogger is ‘tagged’ by a blogger who has received the award and then if they accept it writes a post. In that post they let readers get to know them a bit better with:
1) a number of personal facts (I’ve chosen 10 but it’s not arbitrary),
2) answer the questions posted to them in the nominators post,
3) propose a list of questions themselves to their own awardees
4) finally list the awardees who the award will be passed to.
As yours is a blog I enjoy and admire I’ve ‘tagged’ you as one of my awardees. I hope you don’t mind and whether you join in the game or not is your choice. I’ve displayed your banner (and the banners of the other awardees) on my award post in order to promote your blog and give readers a visual concept before clicking. If for any reason that is unacceptable to you please let me know and I will remove it.
Full details can be found in my post here: http://nattybrat.wordpress.com/2013/07/24/the-natty-brat-has-been-awarded-the-liebster-blog-award/
Thank you for putting together such a great blog that interests and inspires.
Regards
Brittany
(nattybrat of nattybrat.wordpress.com)
I don’t have celiac but I can certainly relate to the “mystery” illness challenges. I have a severe form of chronic Lyme that went undiagnosed for several years. I know how hard it is to be young (I was a teenager) and deal with something like that so I have a lot of compassion. How wonderful though, after all you went through, for it to just take a diet change to make him better!
PS I’m from Santa Cruz area and have lots of family in Maine, including Portland 🙂
Keep up the wonderful work!
Another bi-coastal gal! Gus has a favorite market in Santa Cruz, having traveled there for an annual Ultimate tournament among other things. Can’t remember the name, but believe they make GF sandwiches to order. Have you experimented with any dietary changes to treat your form of Chronic Lyme? No wheat, dairy, “Paleo”, no sugar (including fructose)… ?
Oops, I meant to reply to your comment but accidentally posted a whole new comment…
Hmmm, we have so many great health food stores…my guess would be Staff of Life?
Yes, I’ve done quite a bit of diet changes over the years. Pretty much everything is organic, lots of veggies esp dark greens, no refined sugar (small amounts of coconut palm sugar or raw blue agave), lean meat, lots of healthy oils/fats, gluten-free. I haven’t tried completely cutting out all sugar incl fruit. I tried cutting out dairy but didn’t notice a big diff for myself so added it back in moderation (blood test also confirmed no sensitivity). Because of severe abdominal pain I cut out anything acidic, spicy, rich, fatty, etc for a long time. Now I can eat a little bit of tomato and do well with healthy fats. When I first cut out wheat I also cut most grains but I lost so much weight I had to get IV nutrition (I also suffered from severe nausea from the Lyme). Now, since I incorporated GF breads, etc I’m still very thin but stable.
There are so many differing opinions on this stuff – just when you’ve finished reading an article on why you should absolutely never eat such-and-such, someone else says you should increase it! I’ve found that I just have to trust my intuition & what feels right to my body.
Pingback: Roasted Pumpkin Quinoa Salad - Cooking Quinoa
I love your tag-line on your title: “Baking Joy into Every Gluten-Free Bite!” I also love that you are writing it all down for Gus, and for all of us!