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

 

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6 responses to “Most-wanted gadget

  1. Oh that’s tough! My son is nonreactive too but thankfully his numbers have been in good range. We manage exactly as you do. Gluten is in the house but meals are gluten free. Our dishwasher is awful so we scrub everything off of them before putting them in the dishwasher. My boys use the same condiments but know that you assemble everything and add bread last. No reaching into the silverware drawer if you’ve just touched bread. Noah never eats anything dropped on a countertop in case of CC. Etc!!
    I guess sometimes I wonder about the lab tests. I have a friend with T1D and celiac. Never had GI symptoms. She doesn’t worry about CC. She eats regular oats. I believe she had the scope to confirm results. Anyway, her numbers are within range! ?!? That baffles me but we continue to be diligent. Anyway, good luck! I hope you get some new answers.

    Liked by 1 person

  2. I am celiac and also T1D. We had to move to an entirely GF kitchen due to accidental cross contamination. It made things easier to know I didn’t have to worry about gluten crumbs on the counter, gluten crumbs in the silverware drawer, etc. Also, I follow some GF research sites and the Nima sensor is not getting good reviews. I would hold off until they figure out how to make it more accurate…

    Liked by 1 person

    • Thank you! You are the third person telling me that Nima Sensor has accuracy issues. Not that I had all these hundreds of dollars to drop on it in the first place, but it definitely helps hearing cautionary tales from other people.
      I think our first step will be to re-do the labs. Then we may have to bite the bullet and move to GF kitchen at home, or find a separate and dedicated place for regular bread. Such a pain in the rear end 😦

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  3. Hi we are in a similar situation. My 7 year old daughter has T1D. And non-reactive celiac. Her numbers did come way down after a year but still slightly on either side of acceptable each time. We have gluten in the house and do the same things as you, and trust eating out only at a few select places. I’d like to see her numbers closer to zero but we aren’t there yet after 2 1/2 years. She’s getting tested next week. I also want to chime in about the Nima. The “Gluten Free Watchdog” tests various foods for gluten through Elisa and publishes them to her subscribers (which we joined) and she recently tried the Nima and found it very inaccurate. BUT for some good news, my daughter’s gastro at Boston Children’s Hospital is about to launch a trial for a urine test strip that can detect gluten!! So for those of us who can’t tell if our kids have been gluten can have them pee on a strip and know for sure. He said in the next month or so we will be contacted to take part. So at least there is hope for us to detect the cross contamination. If you’d like to know how it’s working out and timing as I learn more, I can keep you in the loop.

    Liked by 1 person

    • Thank you for all this info. Everyone who chimed in about Nima is saying that it is unreliable. Not that I had all the $ to spend on it, but these reviews are a final nail in the coffin. I’d love for you to keep me posted about urine strips trial. I’m also going to check out GF Watchdog.

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