I repeat. SPELT IS NOT GLUTEN FREE. I had an experience this weekend that led to me start an e-mail campaign. Here is a copy of one of my e-mails:
I saw on Twitter that there is an upcoming conference on grain growing and was hoping you could help me dispel a myth. I was at the OEFFA conference last weekend and found that there is misinformation out there that spelt is a gluten-free grain that it is safe for celiacs. Of course, it isn’t gluten free and is dangerous for celiacs.
The problem is two-fold:
First: Selling spelt and spelt products as gluten-free can make unknowing celiacs ill or well-meaning family and friends can serve their new ‘gluten-free’ find and cause illness.
Secondly: If a farmer believes that spelt is gluten free and also grows GF grains like buckwheat, millet, amaranth, or corn and then grinds these naturally GF grains with the same mill and processes them on equipment used for spelt-they have contaminated their naturally GF grains.
I hate to see small farmers trying to make a living and getting in on the GF markets, but ruining their efforts like this. I did meet a couple who was doing just this and they were none too pleased to have me pointing out their error. So much is at stake for farmers and this would be a costly mistake to make. I hope your organization can help stop this before it happens to another small grain farmer.
Do you keep an eye on local farmers’ markets, bakeries, and stores selling gluten-free products? I’d love to hear your stories of finding spelt marketed as gluten free or other gluten mistakes you’ve discovered in your town or in your travels. Please share.
Wendy, thank you so much for being such a strong advocate for the gluten free community. I have had arguments with friends here about this very issue. And I swear that sometimes it feels like I am banging my head against a wall. Maybe this campaign will finally be the catalyst to make the change and get the word out!! xoxox You rock!!
Why thank you, Kim. I’m not quite sure why there is an almost religious fervor in support of spelt for GF folks. I have talked to some people who feel they can tolerate it better if they were gluten-intolerant. Yet, there are others who are sickened by it. Since I spent so many years not being heard or believed before diagnosis, I would never discount those gluten intolerant types who say it works for them, but I wonder if internally they are being harmed since it does have gluten. No matter, the insistent by some, even in the face of evidence, is dangerous for us and needs to be corrected.
Thank you for being such a strong advocate. I saw something at WF that really bugged me recently – there is a Vegan Worcesteshire Sauce that has Gluten-Free* on it – since I read labels religiously, even if the item says Gluten-Free on the front, I start reading and see wheat protein as a flavor enhancer on it. Then I read what the Gluten-Free* means – ie the * means that the product contains under 20PPM of gluten. Now I get the importance of testing for gluten, but it really bugged me that this product had any wheat protein in it, no matter how tiny, and said it was tested at under 20PPM. Btw, here is the product: http://www.glutensmart.com/robbies-all-natural-worcestershire-sauce.html – how do they know every batch will test below the threshhold? I like the idea of products being tested for gluten (especially gluten-free flours, since, you never really know if they are truly 100% gluten-free) but i feel like if the item has wheat protein, then it should not be labelled gluten-free. THat is going to cause all sorts of misinformation.
I hear you. How much is too much and why risk it? I know someone living in a European country who is in full blown pre-diagnosed celiac symptoms and she thinks it was eating a lot of ‘safe’ GF foods that were 20ppm. If you hit the GF bread/products hard and it’s even got that much, some people still react. We are a zero tolerance family, especially with one of us a silent celiac who has no symptoms until his entire digestive tract is inflamed.
Agreed on the how much is too much. So not worth trying. My ND is adamant that I should not eat buckwheat or millet or GF oats either, and advocates eating only rice, corn, and teff if I want to eat grains (or quinoa, which she calls a pseudo grain). I only liked millet, so that one was easy to give up for me, but I love buckwheat and some GF oats. My compromise has been to 1. only buy raw buckwheat groats (BRM, gf of course) and 2. cut back on GF oats significantly and 3. work on being completely grain-free a few days a week (ie not even buckwheat or quinoa). I have noticed that doing that, combined with cutting back on the buckwheat and GF oats seems to work for me. I am grateful for GF oats though, as my husband loves his oatmeal, and I am not worried about that being cooked in our kitchen, you know?
PS – I am goign to leave the comment re: the condiment I mentioned above on Shirley’s blog to hear her thoughts.
I think because spelt is “wheat free” (at least based on what I’ve read), people are assuming (incorrectly) that it’s also gluten free because they associate wheat with gluten. I haven’t noticed spelt being touted as GF, but I’ll definitely keep an eye out.
Nicole- Thanks for stopping by and commenting.Everything I’ve read says that spelt is related to wheat and all the studies show that it is not safe for celiacs. Somehow it’s gotten out there that spelt and wheat are not related. Scarier still is the movement to manipulate spelt to raise its gluten content for better results in baking. This may make it so even the few gluten intolerants who like it will find they react to the new and improved spelt as it becomes more like its wheat cousin. http://www.springerlink.com/content/tfy7m36kjfq7d653/
I can vouch that Spelt is NOT safe for anyone with at least an anaphylactic wheat allergy. My son had an ER trip after eating spelt noodles!
Thank you, Julie for making the world safer for celiacs and those with wheat allergies by sharing your story. My husband was unconscious and not breathing when I pulled into the ER entrance at the local hospital after multiple yellow jacket stings and I know anaphylactic shock is scary, scary stuff. Can’t even imagine it with a child.
Thank you for posting this! I find it highly annoying when people say that spelt is gluten-free, because as you stated, it is not!!
Not only annoying, but scary. I always worry about kids who get glutened when their bodies are so much smaller and they are still growing. No one wants a setback in the healing process for the little ones especially.
Once again, you rock! I love knowing you, Shirley and Heidi. Beside that fact that you are all such amazing people, you keep me up to date on the latest gf news and info. I don’t have to do any of the working looking for it. Even though I already do, this just reinforces my reading of ALL labels, no matter if they say gluten-free or not.
Tia, you sweetie. You made my day by including me with Shirley and Heidi. They are the movers and shakers in keeping us safe in the gluten-free community. When I need a quick research link or back-up, those two are the ones I call and they are on it immediately. We are in this together and we all have our parts to play. Don’t we have a great community!
I’m a bit embarrassed to admit that I was spelted early in my g.f. days (http://www.mountainoflaundry.com/2009/10/betrayed.html). As a dietitian-to-be, I felt especially duped, but a lesson was learned that applies to all food sensitivities: Labels can be dangerous!
So glad you posted about it and shared the link here. The label pictured in your post would confuse a lot of people.
Wow, this is interesting as I switched to spelt last year. I am not a Celiac, but do feel better not eating gluten. My local health store stocks Spelt in the gluten free section. How has this confusion come about?
I’m researching this, Stephanie. I know our local healthy food store owner convinced us to switch to spelt before diagnosis when we were all sick and no doctors were considering diet as the source. I do hear a lot of people say spelt is easier for them to digest and tolerate, but these people aren’t celiac or extremely intolerant. Even those folks may be in for a sad surprise as the scientists tweak spelt to increase gluten and make it more wheat like.
Hey Wendy,
I can’t thank you enough for bringing this topic to the forefront and being willing to pursue this serious concern for those of us who need to eat gluten free. I shared in a post how I’d been presented with spelt bread as gluten free by my MIL at Thanksgiving a few years ago. That was one very awkward moment when I had to decline and tell her that it wasn’t safe. She didn’t believe me because the local bakery was selling it as gluten free. It’s taken a lot to stop that guy from labeling it as such, but I don’t know if he still tells folks on the side that it can be safe on a gluten-free diet. Thinking about it gets me pretty riled up. And, as comments here have shown, the “spin on spelt” continues.
I got some comments on my post from the spelt sellers/promoters basically calling me a liar. One of the biggest sellers of spelt is Purity Foods (and it was one of their personnel who left such comments), with their Vita-Spelt brand. On their website’s main page, there’s a link to their statement that they will follow the FDA’s guidelines and show “wheat” on their labels, but then state that spelt is not wheat.
On another page, they talk about spelt being an amazing grain that is an alternative to wheat, but then they go on to talk about spelt “as opposed to modern wheat varities.” That implies to me that they consider spelt to be an ancient wheat, which is usually how it’s defined.
And, then on another page, they refer to spelt under “alternative wheat cereal grains” and also call it a “covered wheat.”
Their Celiac Concerns page ires me the most because it talks about those with celiac being able to consume spelt safely.
But, on their FAQs page, in the first Q&A, they state that spelt contains gluten.
And, that last part is the only thing we, who need to eat gluten free, truly need to know. As far as those with wheat allergies, spelt is wheat by everyone’s definition except it seems for the folks who sell it. Another commenter who took issue with my post made me look futher at kamut. On the kamut site, an origin and taxonomy is provided, which includes both kamut and spelt as wheat. (Thank you, disparaging commenter!)
Sorry to be so long winded, but I wanted to point out that the very folks who keep defending spelt, and other grains like kamut, as safe are the ones providing the data to show that they are wheat and they contain gluten.
We must keep sharing the truth. Thanks so much for all your work in this area! Last, thanks to you and Tia for your sweet words on my work. I’m so happy to be in this group of folks sharing gluten-free info. We’re all in this together … each doing our part, and every part is critical!
Shirley
I do love your long winded replies, Shirley. This topic deserves all the words we can fire at it to keep us all safe.
I wanted to pick up some spelt one day until I picked up a package of Bob’s Red Mill and read it. States fairly clearly on there that it is a variety of wheat so I did not get it.
Yay for Bob’s Red Mill! You go Bob!
Wendy – Thank you so much for spreading the word about spelt. It’s so important, especially for people who don’t have an obvious reaction to gluten. It is so clear that there needs to be a public awareness campaign regarding gluten-free flours that are safe for consumption. Do you know how many times I’ve been asked if potatoes are gluten-free? Is rice gluten-free? Seriously! People need to be educated. Looks like it’s up to the blogging community!
Yes, the gluten-free bloggers do have an obligation to get the word out and make sure they are posting the most current, correct and helpful info available. I am so proud of the members of our GF community and their efforts.
Thank you! I don’t know how many times I have also had to defend the spelt is not gluten-free theme. Most recently to a vendor handing out free samples of “gluten-free” spelt bread! I tried to explain that it was not, in fact, gf and that the product could hurt people. She was adamant (and rude) that spelt was gluten-free.
Yes, adamant and rude are words I keep hearing.
Wendy, thanks again so much for publishing this piece.
As you and I discussed before, it’s such a shame that consumers (particularly in our community) cannot always trust the accuracy of the safety information they receive about their food. I was giving a lecture at a national baking seminar not long ago, and at a round-table discussion before my lecture, a representative from a major flour manufacturer (one that also produces gluten-free flours) told the table of commercial bakers that he recommended spelt as an alternative grain, “because many celiacs can tolerate it.” I had to spend the first 5 minutes of my lecture time before the entire group dispelling this myth, and impressing upon them all how important it is to get the facts right before they inadvertently poison people.
We must all remain vigilent to protect ourselves and our families.
Scary stuff, Jules. I am now preparing a list of resources and a handout so I have the info at my fingertips the next time I find myself having this conversation.