Comments on: NIMA Gluten Sensor and a Grand Halloween Mistake

By: Denise

Denise — Sun, 03 Dec 2017 23:30:12 +0000

In reply to Margaret Clegg. I have no problem with your disagreement Margaret. That was a very long time ago and you see I do know what does contain barley mslt. I avoid it avoided encourage all my fellow celiacs to avoided void it too

By: Margaret Clegg

Margaret Clegg — Sun, 03 Dec 2017 19:01:52 +0000

In reply to Denise. Thanks for reading and commenting. Glad to know that you are feeling so much better! I will have to disagree though that it is the "least potent form." Celiac has over 300 associated symptoms, and people react to different grains differently. We must all be vigilant and medical professionals need to do better.

By: Denise

Denise — Sun, 03 Dec 2017 18:57:23 +0000

I think it’s best to assume anything made with crisped rice contains barley malt unless it states it’s made from certified gf crispy rice. I’ve been at this diet for 30 years, (about to start my 31 year) and the candy bars in question have always contained barley malt. It’s in both the fun sized and the full sized.

When I was diagnosed way back in the 80s, rice krispies were fed to me in the hospital. I asked the dietitian about it and she said they were aware of the malt but they continued to use them on their celiac patients because they were well tolerated by the majority of celiacs. That fact was noted in all of the paperwork I was given from the hospital. Mind you, I was majorly sick when I got diagnosed. I was hospitalized for around 2 weeks. In spite of eating the rice krispies, I still healed slowly but surely. These days I don’t eat much cereal, but at the time I was starving and the rice krispies actually didn’t hurt to eat. Most foods caused so much pain my poor belly, I had totally stopped being able to eat anything for a good month before my diagnosis.

I’m not telling anyone it’s ok to eat cereals with barley malt syrup. Just want people to know if they make a mistake and and accidentally injest it, it’s probably the least potent form of gluten to mess up on.

By: Margaret Clegg

Margaret Clegg — Thu, 09 Nov 2017 11:42:52 +0000

In reply to Julie. Dear Julie, Thanks so much for your comment! I was so excited when NIMA came out. I think it has promise if they can fox some issues. Unfortunately it was not verified by outside parties before it was released, and has caused more headaches than happiness. Here's hoping they can get the kinks worked out!

By: Julie

Julie — Thu, 09 Nov 2017 04:24:21 +0000

Hi Margaret! Thanks so much for this write up. I feel the same way about the Nima. I’m so excited that advances Luke this ate being developed, but I’m not comfortable with its performance to trust my health to it. I’ve learned that it also does not detect fermented gluten, which means soy sauce and beer. As a community, we need to continue to advocate for clear labeling and safe production practices. Thanks for your voice!

By: Margaret Clegg

Margaret Clegg — Wed, 08 Nov 2017 23:05:12 +0000

In reply to Jacquie.

Dear Jacquie,
Thank you so much for reading and for commenting. Your story is so important for so many reasons.
1) Even the most careful of us still manage to get gluten in our diet. It happens, and we all need to give ourselves and each other grace. Please extend yourself some grace.

2) Companies need to do better with packaging. Glad that Nestle finally gave you answers, albeit after the fact. Milky Way minis also contain barley malt, and I’d be curious if it lists that on the minis. (The Midnight & Just Caramel do not contain gluten ingredients.)

3) It reminds bloggers like me that we need to do thorough investigation before printing anything. The person who originally posted the picture is a blogger, who compiled a “safe candy list,” and included the 100 Grand on the list based on the NIMA results. That blogger quickly corrected him/herself and notified his/her followers. But sometimes the damage had been done at that point.

I truly appreciate your comments. If it’s okay, I’d like to share your story on my FB page. And as always, please feel free to reach out any time.

Sincerely,
Margaret

By: Jacquie

Jacquie — Wed, 08 Nov 2017 22:47:12 +0000

So my young kids have Celiac. They’ve been successfuly gluten free (except when they glutened that one time at school) for 1.5 years, at no small effort to me. I pour over articles, wait on hold for 20 minutes stretches and and read the blogs. I google everything.
This Halloween I glutened my girls with the 100Grand bar. I had seen it on 2 safe lists prior to trick or treating. The funsize candy has no listing of ingredients, just allergen warning. I KNOW about barley malt in crispies. And yet… I saw it online and thought it was safe. They got like 10 of these for some reason this Halloween, probably due to the Costco mixed bag that has it. They tried it and LOVED it. Then proceeded to eat that candy only as dessert and treat for the next 2 days. Then I noticed some bloating and unusual has from the more sensitive twin. I immediately called Nestle for an answer and discovered I had Glutened them. Nestle could really do us all a favor and PUT the Darn ingredients on the candy! Others do, it’s not that hard.
—my kids are fine. They got some skin rash, not painful and the gas- no headache or diahrrea. But I’m still mad at Nestlé, myself, and illness in general. Thanks for this post.