Where everything is gluten-free…

Nope, not some utopian world. I’m talking about Gluten-Free Expo, this year re-named as Nourished Festival.

It gives me something to look forward to in February. No offense to those who celebrate, but Valentines Day is not my thing. Couldn’t care less. And after the holiday season and then a couple of family birthdays in January, February has nothing that I’m particularly excited about.

Last year’s festival

This will be my third time going to the Fest. Last year V came with me and loved every minute of it. It’s not often that she has an opportunity to be somewhere where she can eat EVERYTHING. And we don’t have to worry about asking any questions or double checking. And for people with other allergies, this year’s Fest is going to be even easier to navigate because of better signage and ingredient/allergens indicators.

Happy sampling

Diabetes management during an event like this is tricky. We have to SWAG (scientific wild ass guess) carb count on everything. Last year we failed. V started in good range and despite what we thought was aggressive guessing and dosing still ended up with high BG. This year I expect that we will fail again. But whatever! It’s totally worth it.

I’m looking forward to discovering and sampling new gluten free products, getting new ideas and inspirations, and spending some time in a setting where EVERYTHING is gluten-free.

Join me and save 20% with code ADVANCE if you purchase tickets by 2/8/19.

Get your tickets here

DISCLAIMER: Nourished Festival is providing me with free entry. I am not compensated in any other way, nor am I asked or expected to review or promote any products or companies associated with Nourished Festival. All opinions are my own.

A Tale of Three Jersey Mike’s Restaurants

It was V who noticed a big sign on the window of one of the Jersey Mike’s restaurants: “Gluten-Free Bread Available.” Do you have Jersey Mike’s near you? They make yummy sandwiches. And let me tell you, it’s not common that a sandwich place will have gluten-free offerings. Naturally, we had to check it out.

We have a few locations near us. I was rather skeptical as V insisted we visit one of them. As we got in line, I noticed this sign!

Photo is a little blurry, but you are looking at very clear and detailed instructions on how to prepare a gluten-free sandwich in a way that would minimize chances of cross-contamination.

As we placed our order, our expectations were met and exceeded. Without us even asking, staff informed us that they would be preparing V’s sandwich in the back using fresh ingredients that were not part of the “buffet” set up at the counter. They had a couple of different sizes of bread available. They knew very well what ingredients were gluten-free and uncontaminated.

We had to wait a little bit longer for V’s sandwich but it was completely worth it. It was delicious. We went back to this location several times and had excellent experience every single time. Instant winner, shiny A+!

When sometime later we came to a different location, we assumed that we would have a similar experience. We proceeded with our order without asking any questions. Big mistake.

The staff started preparing V’s sandwich right at the counter. “Don’t you do it in the back, separately?” They looked puzzled by our question. “No, we change gloves and put a clean piece of paper on the counter.” Oh crap. They were rather clueless about cross-contamination. V was very hungry, so we decided to risk it but were watching them closely. On at least one occasion, the staff set the sandwich on the counter, then immediately realized it, picked it up right away and placed it on the paper. If my looks could kill he would have dropped dead on the spot. This was not safe. We really should have walked out, and if V had a history of getting sick after ingesting gluten, we would have walked out. I felt extremely uneasy and unhappy. I debated going back in and talking to staff but decided against it. It was not their fault that they did not receive proper training. Needless to say, we will not be returning to this place again. Instant looser, big fat F!

By the time we visited a third location, closest to our home, we adjusted our expectations. I scanned for a sign that we spotted at the first location about safe handling of GF orders. It was nowhere to be found. There was a different sign by the counter, a standard disclaimer that while GF ingredients are available, they may come in contact with gluten and that safety is not guaranteed. We asked the questions about ingredients, preparation and cross-contamination. First time ordering, staff seemed reasonably well-informed. They made V’s sandwich in the back; however not all ingredients were safe for her. Bacon was grilled on a shared grill. And they did not have uncontaminated avocados. On a second occasion, staff were less informed, though receptive to my requests. I had to ask them to prepare sandwich in the back. And when I noticed they used avocado out of a container at the counter that is used for all breads, spreading it with the same utensil, they had to start over with a different piece of bread. While I do appreciate that overall staff were more informed and accommodating here compared to the second restaurant, I think it’s completely worth it for us to drive just a little bit farther out to the first restaurant. This third restaurant gets a passable C+.

Three branches of the same chain, three very different experiences. And moral of the story is to never assume and to always ask questions before ordering. Sometimes it ain’t easy being gluten-free.

This GF part of our life

This is a familiar scene for us: waiting for the doctor. And when you are in the “Buy One Autoimmune Disorder, Get One Free” club, like us, you get to experience this scene more often.

Today was V’s annual GI follow up. Things are OK. The antibodies are still not at normal levels but continuing to trend down. The doctor told us that they may not get to a normal level because adhering to a strict GF diet is hard unless you don’t eat outside of the house and maintain a full GF house. Can’t agree more! We are very careful both at home and outside, but accidental cross contamination happens sometimes. But everything else is looking good, V is not experiencing any other/new/troubling symptoms, so the doctor is not concerned and we are to stay the course. That’s a relief because between endocrinologist, dentist, orthodontist, and allergy and asthma specialist, V has some kind of medical appointment just about every month. We will gladly keep our GI visits to once a year.

Bonus good news: unbeknownst to us, when V got her Celiac panel done last week, they also did her A1C. And it’s pretty darn good, which earned V enthusiastic praise from the GI doc.

Five Years of T1D

5/22/18 marked five years since T1D diagnosis. It’s hard to believe that five years have already done by. In five years, our family turned into T1D (and gluten-free) pros. So this Diaversary was a cause for celebration of living well with and despite T1D and Celiac.

The morning of 5/22/18 started with a breakfast complete with a heart-felt whipped cream message, and V sporting her new awesome T-shirt. Pop quiz: Who can tell me what the T-shirt design means?

V wanted to mark the day by getting a treat from Starbucks. Unfortunately it was thwarted by diabetes…

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The trip had to be postponed until the following morning. But fear not, V got to check off her bucket list wish of showing up to school with a cup of Starbucks in hand.

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Then the following day came V’s quarterly Endocrinology appointment. I was curious about her A1C. Her meter and Dexcom readings were suggesting improvements. I was also curious about some other goals that V was working really hard on. When V’s endocrinologist walked into the exam room, she was practically beaming at us. She was so pleased with everything. As she was gushing praise on V for doing a great job, I tried to peek at the paper in her hand with A1C result scribbled on it. Since I was looking at it sideways and upside down, I decided that I was not seeing it right. I didn’t believe it until the Endo announced it. 6.8! V’s best A1C ever!!!

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Better yet, the Endo was also pleased with the range of V’s numbers, which is a different way of measuring quality of BG rather than only looking at the average. And there has been progress with the other goals V had been working on. In other words, success on all fronts!

The Endo suggested that we really ought to celebrate, and who are we to go against medical advice? A couple of days latter we hit our favorite breakfast joint, where V feasted on amazing gluten-free Cinnamon Roll pancakes. 100% bolus-worthy!

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As V’s Diaversary Fest was wrapping up, we decided to update our T1D and GF family photo, with all four of us wearing our matching amazing T-shirts.

 

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So, FU T1D! Here’s to 5 years of kicking its butt, and may V have her entire lifetime of living well with it!

(P.S. If you still don’t know what the T-shirt means, please guess in comments!)

Gluten-Free Expo, 2018!

I haven’t been posting much lately. Life is busy. And then I went ahead and got me a claw…

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Being the graceful person that I am, I fell while jogging and broke my pinky. It’s hard to type without being able to use my wrist, so I have to be short and sweet.

I’m here to tell you that Gluten-Free Expo is coming to San Diego again! V and I cannot wait to go. I can’t tell you how amazing it is to be in a place where every single thing is safe for V to eat. Now that we are veteran Expo-goers, let me share some tips with you.

  1. Don’t pay full price! Use this code to get 20% off: ADVANCE
  2. Wear comfortable shoes and be prepared for a lot of walking.
  3. Come hungry! So many yummy foods to taste.
  4. If you have T1D, be prepared to do some serious guesswork and use a LOT of insulin. Little bites here and there add up quickly to a metric ton of carbs. You are likely going to underestimate them. Be prepared to dose as you go. If you have a pump, extending your bolus may be a good strategy. Give yourself a hefty dose upfront and spread out the rest over a few hours. You can always cancel extended bolus if it’s too much.
  5. The Expo is so much more than food samples. There are classes and presentations galore. Check out the schedule and attend some. You may find these programs especially beneficial if you are new to GF life.

Don’t live in or near San Diego? There may be an Expo coming to your town. Check it out and go.

Last but not least, I’ll leave you with a photo of an amazing GF cake made by our recent 16-year-old house guest. (Focus on the cake. Ignore ugly grout please.)

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100% GF. 150% amazing. And yes, it’s a little boozy too!

Disclaimer: As an official blogger, I am expected to promote the Expo in my blog. I was also provided with complimentary entry tickets. All opinions are mine.

P.S. I was planning on going to and writing about the expo well before being selected as an official blogger. Because it’s awesome.

P.P.S. I am not expected to write a review/post-expo post. But you can bet I’ll be doing it anyway!

Most-wanted gadget

V’s annual Celiac blood panel was done recently, and results are not great. Four years after diagnosis and her antibodies are still positive. Worse yet, the numbers crept up a little from last year. Last year things were heading in the right direction and her doctor was hopeful that with this blood work result everything would be in the negative. Not the case.

I’m really frustrated. What are we doing wrong? Obviously somewhere, somehow, V gets exposed to gluten. But where? Is there cross-contamination at home? We are not 100% gluten-free. We keep regular bread and bagels, cereal, some pre-packaged snacks, and that’s about it. All meals we make are gluten-free. We are extremely careful about cross-contamination. We have a dedicated toaster oven and a cutting board. But perhaps it’s not enough and we need to go completely gluten-free at home?

Or is the problem with restaurants where we eat? Once again, we found a few that we consider safe. However, because V does not typically have any reaction to gluten that she can feel or we can see, we have no way of telling if what she is eating is actually safe.

Or perhaps the issue was during the cruise, where getting a safe gluten-free meal proved to be rather a frustrating challenge? Since we did the blood work shortly after we returned, it may be reflective of possible cross-contamination there?

How I would love to know for sure. And guess what? There is actually a gadget out there that could help us. Nima Sensor will analyze a food sample and tell you if it contains any gluten. If we bite the bullet and go 100% gluten-free at home, we can test food at restaurants and maybe finally track down the source of cross-contamination.

There is one little glitch. The price of Nima Sensor is a cool $275. And that’s just for a starter kit. Since each food sample requires a new capsule, those will run you more. The website recommends a subscription of 12 capsules per month at a cool price of $60 per month. If we don’t do subscription, we have to pony up $72 for 12 capsules. Those capsules will go quickly if we want to test V’s meals when we dine out, even though we don’t normally eat out more than once a week.

So here I am, staring at this cool gadget, really wanting it. But it is simply too expensive.

What do we do? I have no idea. If you are reading this post and you have Celiac, I’d love for you to weigh in. I’m also curious if it’s a reasonable expectation for tests to be negative. It is really possible? Would you eat a product that, according to the label, was made on equipment shared with wheat, or is that a no-no? What about a product that is made in a facility that also processes wheat? It is unreasonable for us to think that we can live a normal life where we don’t wrap V in a bubble, allow her to eat at places other than home, and don’t have to be on edge about everything she puts in her mouth?

We are going back to the GI doctor later in the summer to discuss all this. Perhaps we can squeeze in another round of blood work just to rule out vacation cross-contamination. Aside from that, I’m at a loss.

As safe as it gets: samples that we got at the Gluten-Free Expo