I originally wrote the post below nearly two years ago; March 2015. Today is the fifth anniversary of that worst day of my life. As you can see from the timeline, he recovered----we were blessed with a miracle.

​So what is he doing on this fifth year, after those days when we had no idea what his future would look like?---exploring Antarctica. He is experiencing yet another trip of a lifetime, on his quest to step foot on every continent. 

Life's roller coaster. Even at its very lowest point, we must keep in mind----it goes back up.

I recently shared a post about my son and something he was born with, leaving me to wonder if it was due to my nutritional deficiencies. I had him when I was 29, after two other pregnancies, 3 and 6 years earlier, and after living with undiagnosed celiac most of those years, most likely. (and I still had eleven years to go before being tested and diagnosed!) My body was pretty well zapped. 

I think about all the unnecessary health issues I faced as well as all the unnecessary health issues that could, and most likely do, occur to babies born to nutritionally deficient moms of undiagnosed celiac (I'm assuming and would guess. Remember, I'm not a doctor, nor do I play one on TV).  

WHY is testing not done routinely?! I ask this all-the-time.

Of course, I hear things like: cost, insurance, cost, insurance. 
Silly me, I see the cost of being sick (for YEARS) much higher than that of the testing, but that's just me. 

So now let's fast forward to 26 years after my last child was born to the birth of my most recent grandchild (in 2015). We were 'privileged' to discover the number of newborn screenings that are conducted!

*Special Note: I'm not saying----nor do I believe---that screening for celiac is appropriate for newborns (unless it's genetic testing) since they wouldn't yet be consuming gluten.
But we have kids with obvious symptoms not getting tested---its a big thorn in my side!

I had my third (and last) child in 1989, a boy after 2 girls.  As I mentioned in a previous post, I felt my healthiest during my late teens and my first two pregnancies, making me wonder if there is some sort of hormonal something-er-other that interferes with celiac (temporarily, at times, when our bodies need nutrition the most; a hormonal remission of sorts? I'm not a doctor, nor do I play one on TV. I don't have an answer to this question, of course, but those were clear times when I felt my best.)

Looking back, and knowing what I now know (and just looking at photos of myself) there is no doubt that my body was starving for nutrition while I was pregnant with my son. I certainly didn't feel as healthy as I did with the first two. 

I had a feeling (before Michael was born) that something was wrong with him. It wasn’t a feeling that kept me up at night or made me extremely fearful; it was just a feeling, a little voice. I didn't say anything out loud (other than sharing my thoughts with my mom), afraid that if I said it out loud, that "something bad" would come true. ​

I remember noticing a flash of something different about Michael's left eye the day before his first doctor’s appointment, three days after he was born. The thought entered my brain, then seemed to evaporate. I realized later that I knew there was a problem before I was even told.  The doctor seemed to be examining his eyes for a long period of time before she said she couldn’t detect a red reflex in his left eye.  

I asked her what this meant, as I couldn’t help but notice the look of concern on her face.  She made it clear that she was not an eye doctor and that it was important for him to be seen by a pediatric ophthalmologist. The fact that she made the appointment with the specialist immediately, herself, frightened me. There was a definite sense of urgency.

I found out later how fortunate I was that she didn’t tell me what she suspected: retnoblastoma.

​Less than a week later, while being examined by the pediatric opthamologist, with eyes dialated, it was obvious there was a problem. Basically, he had a cataract, (actually, a bit more involved than just "cataract." It was called PHPV (Persistant Hyperplastic Primary Vitreous) and involved scarring of the blood vessels.)  

​My baby needed surgery to remove the damaged lens. He would then be fitted with a removable contact lens. Of course, the sooner the better. The earlier he could see out of that eye and the sooner he made those connections to the brain, the better chance he had for vision in that eye. I was scared, naturally. I was depressed. And oh was I tired. It's true, sleep is an escape, and that’s all I wanted to do. Of course, I was also suffering from un-diagnosed celiac at that time (and would be for the next 10plus years!). Oh how much more energy I'd have had had I been gluten free. Clearly, un-diagnosed celiac doesn't just affect the person with it; it affected my kids, my marriage, my family. Oh how much better my emotions would have been had I been gluten free. But----that was the "then." We can only make good with the "now."

​Poor health affects our lives. Good health affects our lives. Good health that follows poor health gives us an appreciation for life. My quick improvements gave me a lot to appreciate----and it brought a lot of change. With good comes bad and with bad comes good. Life is a roller coaster.

My failing marriage finally ended a couple years into my gluten free journey. Life happens. It was a difficult time, but when we're at the bottom of a hill we either settle or figure out how to climb back up. I went back to school and started setting goals for myself. I was going to (and did) finally get my education degree.

My kids and my friends eventually started to ask when I was going to start dating. "Dating?"
I didn't know how! haha  It was very-----awkward. I hadn't dated in over 25 years! So I went outside my comfort zone and joined a dating site. eeek!  

I went on several first dates (with no follow up.) My girlfriends teased that I was too picky.  But I was NOT going to force something that didn’t feel right. I wasn't looking for a husband. I was fine on my own. I had a goal and a need to be independent. I didn't want to find someone I could lean on. I didn’t need a boyfriend. But of course, sharing my life with someone else would be nice. So I had fun dating.

I finally reached the point in my education where I had to quit my job as a teacher’s aide in order to start the 2-year Early Childhood program. My contract was about to expire on the dating website I was on, so I was going to let that go for a while and just focus on school. But then I got an email from Steve. So, unenthusiastically, I agreed to meet him. The chemistry wasn’t immediate, but it was there by the end of the date. And we’ve been together ever since (except for that time when I broke up with him – for about 4 hours---I must have been glutened, haha).

​Gluten Free Donut Holes

First warm 2/3 cup milk until room temperature. (I've used both reg milk and almond milk--both have worked just fine.)
Add 1 tablespoon yeast to milk and stir until dissolved (I can never get it to dissolve completely, but it still works out fine.) 
In a separate bowl combine: 
½ cup potato starch
½ cup tapioca starch
½ cup arrowroot starch  (I avoid cornstarch, but I’m sure you could use this instead of arrowroot starch)
1/4 tsp baking soda
2 teaspoons baking powder
½ tsp salt
2 ½ tsp xantham gum
In your mixer (I use my KitchenAid stand mixer) blend 2 tablespoons shortening with ¼ cup sugar. 
Add:
1 egg
¼ cup oil (I use olive oil)
1 tsp vanilla
and milk/ yeast mixture

Slowly add dry ingredients, mixing until smooth.

Heat oil (I used a heavy saucepan on the stove) to about 300degrees.
 (I keep temp near 300degrees but sometimes it gets to 350)
Add approximately 1 level tablespoon dough to the oil at a time, not crowding. If they are too big they won’t cook in the middle. Keep turning them. They round out nicely and quickly float to the top. 

Remove to paper towel covered plate when browned. 
​
Don’t cook too fast or the center won’t be cooked. If you notice them sinking in (not holding their shape once removed) you will know to keep the next batch in the oil a bit longer.
Makes 2 to 3 dozen (depending on size)

Glaze when cooled.
I didn’t measure this real well, so these are approximate amounts:
Approx 2 ½ cups powdered sugar
1/4 to 1/3 cup milk
2 tsp vanilla
Blend well. You want it kinda soupy. Roll donut holes through the glaze a few at a time. Set on a cooling rack or wax paper until glaze dries. 

When making a double batch I double everything but the yeast. (1 tablespoon.)
These freeze very nicely! 
Enjoy :)

(This post may contain affiliate links.)

One of my very first attempts at pizza crusts, back in the fall of 2000, was Chebe. I've tried several along the way, but it always comes back to Chebe. My favorite!

I like to make several pizza crusts at once and freeze them. When we want pizza, its easy! 

​6.) Now you have a nice, thin, premade pizza crust ready to top with your favorite toppings.

I get 3 9" thin crusts from each box.
Pizza night is easy when they are ready and in the freezer.
​ Everyone can make their own pizza, their own way.  
I put freshly topped pizzas in a 425degree oven.

I'm not a "recipe" blog, but I do cook and bake and I do have some to share from time to time. 

I've experimented with this a few times, using gluten free recipes I've used and from non gf recipes I got ideas from. All three were a hit, but this time I wrote it all down, took pictures, and am now sharing. This is a keeper. I ate some right out of the oven this morning - delish!
I'm eating some right now, right out of the fridge - delish!  
​It also freezes very well (which is the nice thing about dividing it into two pans.)

My husband and I have our regular places where I feel safest. Venturing some place new has made for some disappointing experiences (as well as some very joyful ones!)

A restaurant that offers a "Gluten Free Menu" when they don't really completely understand the diet, is dangerous!

One experience last year:
I ordered a dish (from their "gluten free" menu) that included diced red potatoes. Me being me, I asked questions. Come to find out, those potatoes are cooked in the fryer, a fryer that is NOT dedicated gluten free. I was told that if I'm that sensitive to request the steamed potatoes.
     Was that on their "gluten free" menu? -- NO!

Chips and salsa were also on their gluten free menu.
     Were their tortilla chips fried in dedicated oil? -- NO!  

I told the manager that those items should not be listed as gluten free - that that's dangerous - that the chips aren't really gluten free!  I was told "we aren't doctors" - and I said (nicely) - "I don't need you to diagnose me - I need you to know your food."  
RIDICULOUS! 
Any restaurant that does not know their food, does not get my business (or the business of those who dine with me). 

​I NEVER expect a restaurant to accommodate my special needs; I don't look down on a restaurant that is honest and up front and says, "sorry, nothing gluten free available." Their honesty is oh-so-much better than those that pretend.
​
But if a facility says they offer gluten free items, they darn well should know how to keep it safe for those who need to be gluten free, don't you think? 

Beyond Celiac offers kitchen training programs for restaurants, schools, colleges, hospitals, nursing homes, etc. This is something GREAT to share with facilities in your area. 

​*I am not paid to advertise this program. I wasn't asked to share this information. I am just so passionate about this need, especially for schools and medical facilities, and I'm grateful that there is such a program available!
(If you know of any similar programs, please let me know and I will share it as well.)  
Let's make a difference.
I sure wish the hospital and rehab my son was in five years ago was trained in feeding their gluten free patients. (More information on that later this month).

Ever since I was diagnosed with celiac (in the year 2000) and discovered the "WOW" factor of a gluten free diet after 40 years of symptoms, I have wanted to shout it from the rooftops. I had a wonderful opportunity this summer to shout it out to a group of women who can impact boys' and girls' lives in a big way (who DO impact boys and girls daily)---100 school nurses at a School Tools for Nurses conference in Missouri.

I received an email last fall from one of those nurse that made me cry---literally (and still makes me cry.)

With her permission, I am sharing Connie's email, and a picture of her son, Aaron. I remember her coming up to talk to me after my presentation. It was great to hear back from her with an update about her handsome, active, nearly sixteen year old son.

Connie is a school nurse who is now better informed about celiac signs and symptoms and will be on the look-out for kiddos in her school. And with the materials provided through the School Nurse Celiac Education program, Gabriel's Journey, she (and all the other nurses who attended the conference), has information to share with parents. 

Celiac is the most common genetic autoimmune disorder, yet the most under and mis-diagnosed. And to make it even more complicated, there are over 300 symptoms. As you can see in Aaron's case (and my own son's case) NCGS (nonceliac gluten sensitiviyt) is very real! 

Gabriel's Journey was created by someone like me, who just wants kids who are sick with symptoms to have it recognized. And who better to be educated to recognize it than all the amazing school nurses out there who see our kids every day --- more often than their doctors. 

Materials are available through the website (and heck, if you are within an hour or so of the St. Louis area, I'd love to come talk to your school nurses, or teachers and staff.) 

email: dsimpson@dsimpsonbooks.com
​phone: 618-830-8136

UPDATE: I originally shared this post in the fall (2016). After resharing recently, mom saw it and sent an updated photo. Six months (or so) gluten free. WOW, wow, wow. He started weight lifting about a year before going gluten free but was frustrated with the inability to gain weight no matter how much he ate (and he ate a lot!). His bloodwork for celiac was negative, but he wasn't feeling well and the family wanted answers, so they chose to try the diet anyway.... And WOW! He's now able to build muscle, obviously! 40 pound weight gain!

​It was odd - Once gluten free (not long - maybe a couple months? a few weeks?) - I realized, no more crunching. I couldn't care less for that ice. I discovered (through discussions with others) that ice chewing is a sign of anemia. And, as many of us know, anemia is a symptom of undiagnosed celiac.

Another weird thing - I also craved the smells of lighter fluid, oil based paints, gasoline. Ya, I know, not good, but signs of "something is wrong here."   

Years and years of subtle - and not so subtle - symptoms. Symptoms that can be avoided with awareness and correct diagnosis.

Know an ice chewer?  Tell them to get their iron checked.
Know someone who is anemic? Tell them to get tested for celiac. ​

Other big red flags that should have resulted in celiac testing much earlier than it was:
Hypothyroidism
Osteoporosis

​Hmmm…. Talk about a long way of getting to the whole “thyroid” connection, lol. Anyway, I breastfed my new baby for nearly the first year. For months after quitting, however, the milk continued. Then came examples of the incredible waste of time, money, and unnecessary fears that come with tests to find ‘simple’ answers. Blood tests for a pituitary tumor – or was it scans? Or was it both?  I honestly can’t remember. But it did take some time and tests until ‘they’ tested my thyroid and discovered I had hypothyroidism.  A daily pill to level things – and the milk production stopped – and other things improved – as I remember, most connected hormonally.

I remember thinking this was the reason for other issues I struggled with: fatigue, bruising, very dry skin, inability to gain weight, although hypothyroidism generally results in weight gain, not loss. Comments from doctors along the way suggested it ‘odd’ that I was so thin, but no one had an answer or suggestion for a possible answer. Of course, I eventually discovered I had another issue to blame – celiac. But that discovery didn't come until many years later.

​As I worked on my presentation for the Gluten and Allergen Free Wellness Event in St. Louis last year, "The Emotional Side of Dietary Differences," I was reminded of where my journey began: the joys of having answers, combined with the struggles of diet change and even of the sense of loss. It brought me back to my reason for wanting to be the best me I can be, of how and why I worked at not feeling sorry for myself, and why I wanted better health:
​                                                  for my children.

They are all grown now, all in their late 20's to early 30's. Eek! (but I will NOT say "I'm old." Never!! haha) Even though they are all grown, I cherish them now as I did the day they were born and as I have every day in between. They are my reason for wanting to be healthy, and they have always been my reason for wanting to make this diet “OK.” ​

To be healthy, a gluten-free diet was (and is) a must.

To be a mom, I had to be able to bake chocolate chip cookies.

Life is a series of chain reactions. It is not, however one single chain where one event loops through another. Each event (birth, death, job change, marriage), each milestone, each spoken word, each smile, each response (or even lack of response), loops together with more than one loop to create not just a long single chain, but a chain link fence. Everything (big and small) affects other aspects of our own lives----and certainly affects the lives of those around us: our kids, our parents, our friends, our coworkers, and even the stranger you offered a smile to, brightening their day and then that of those in their life. 

​The state of our own health doesn't impact just us, does it?

There are several links in my fence of life that come under the label of celiac: lack of diagnosis, post diagnosis, the gluten free transition and lifestyle. And many many more links are connected to those general headings.

Lack of Diagnosis link: either myself before I discovered I had celiac, those affected by me before I went gluten free, family members who were never diagnosed, and many who have been connected to my life in some way along the path, whose own lives were affected by my un-diagnosed celiac.

I choose not to be bitter over those years when my health (my life) could have been oh-so-much better had I been gluten free. It is what made me the person I am today---passionate about education and awareness, about celiac testing (and now, safety in hospitals for patients who need to be gluten free---because all too often they cannot accommodate gluten free).

Sadness does, however, creep in a bit when I wonder about the impact my "less than" health had on my kids' lives. 

‘Post diagnosis" link: renewed health, creating a support group that impacted many, many others, divorce, back to school, new career, new love. My-oh-my has my life changed since I went gluten free. The chain reaction has been profound!  A roller coaster of events, actually. Peaks and valleys. Oh so so many.  And then there are those impacted by these events since their own birth – three incredibly influential people have impacted many of my own decisions – my children (all grown now). We even discovered that my youngest has NCGS (nonceliac gluten sensitivity). Being gluten free has impacted his life in such a positive way.
​
My kids. They are why I wanted to be the best me I could be. I hope that my journey following diagnosis offered the statement, "It is not our illnesses, (or our faults, or our mistakes) that define us, but how we choose to improve and move forward."

My original objective with this blog was to connect all the dots in my life to undiagnosed (and then diagnosed) celiac. I hope to accomplish that this year, along with some recipes and other fun things thrown in. Thanks for following my journey.