SPELT…..can you? do you? should you?

I was recently sent a large box of spelt products from someone at Vita-Spelt who knows my dad. He claims that spelt is ok for Celiacs to consume. I have read that it is an ancient grain and that the wheat that is currently eaten was genetically altered in the mid 50’s and since then, well, the levels of gluten intolerance have grown immensely. My box came with no literature to convince me, just the word of a guy who wants to create a locally made product that gluten intolerant and wheat allergic people can eat. Here is what they say about spelt and celiac.

I was sent spelt sourdough organic pretzels, two bags of non sourdough pretzels, 2 bags of penne noodles, some elbow macroni, 2 boxes of spaghetti noodles, 2 boxes of whole grain spelt spag noodles and a bag of sesame spelt snacks.

I have been staring at this box for 3 weeks. It keeps staring back. My dad called and asked if I had tried any of the products yet. I said “no, but I plan to, probably tonight”. That was yesterday morn.

When this guy approached my dad, I sent my dad a flurry of cut and pasted websites that said Spelt is a no-no and told my dad to forward them to the guy. The box of spelt still appeared. Then yesterday I read a post on Eat Wheat Free… site where she mentioned eating spelt. I asked if she was gluten intolerant and she said yes and that she has no problems with spelt. It was a timely post as I probably would have waited at least another week to make a new excuse to give to my dad. Truth be known, I am scared to try it.

Two reasons.

One, the reaction that I may have. I have had some cross contamination issues – every 3 weeks or so and it is not so bad (I am on the road for work a lot), just pretty uncomfortable. So to eat something that is by law, required to label it (wheat) after spelt, is a bit intimidating, as I assume that if I react, I will react badly.

Two, if I react, I will be tempted to go for the gusto and after a year of not any gluten, start shoving delish crusty breads down my repaired esophagus (thanks to Nexium). This in part because, while I was eating gluten, the last year and a half, I lost weight (as most do), but I was already overweight to begin with – so I thought it was great. Yes, I had my share of digestive issues, but I could deal with them. I stopped eating gluten and the weight came back….plus an extra 15 pounds. Not fair! All I did was take gluten out and feel like I am being punished. For 7 years I ate what ever I wanted and didn’t gain weight. So now I need to be gluten free and diet? Well, you can already guess how I feel about that. Now comes the really bad part, the part that is no different than anorexia really. If I eat gluten, it makes what ever I eat that day essentially calorie free. Everything is expedited out of my system before it has a chance to digest, and does damage in the process. So I am afraid that if I react to the spelt, that it will send me on a gluten bender so to speak and I will just be purging my body in a different way. Yes, this is sick, but I think about it.

So, let’s hope I don’t react. Let’s really, really hope cause I might just be strong enough not to purposefully damage my intestinal tract – probably – but it is in my head. Let’s really hope because if we could eat spelt – we can make bread the old fashioned way again in our kitchens. When traveling I might buy a spelt loaf to take with me to make sandwiches. It won’t change the dining out process, but the home life would be tastier.

And…

I could make normal beer again and we could all gather in my backyard and drink a keg of it while eating spelt bruscetta with tomatoes and basil from my garden.

Here’s to hope, experimentation and strength to do the right thing! I now have eaten three of the sourdough spelt pretzels to test it out. Stay tuned for the results.

i’m out

10 thoughts on “SPELT…..can you? do you? should you?

  1. ElwoodCity,
    So far so good. I really didn’t notice the 4 pretzels and I think I would have. But I did eat a heavy, beefy (a spicy, blackened cheeseburger) meal too late in the evening and had trouble digesting that, so I want to make sure that it was the beef and not the spelt. I am going to cook up some of the noodles for lunch today for another trial. I am keeping my fingers crossed as I have to hit the road this afternoon and evening for work, but I do know every rest area well between Lansing and my destinations…just in case.

    Does spelt affect you like wheat would? Have you tried making an all sorghum bread?

  2. Hi Fresh Ginger! I’m really happy to have discovered your site, but I wanted to comment on the Spelt issue… I look forward to reading your recipes and enjoying your blog in the future!
    -Sea

    All of the Gluten Free Organizations here in the US are extremely firm about Spelt being off limits for Celiacs as it still contains the Gluten protein which provokes the immune system response. Personally, I think it’s pretty irresponsible for this company to promote their product as appropriate for Celiac Sprue patients without doing extensive medical testing. They state that patients confirmed by biopsy have “Eaten spelt without difficulty” but what does that mean? Have they followed up with long term antibody testing to be absolutely certain that consumption of their product is not raising antibody levels? (Recommended for Celiac patients yearly at reputable Celiac specialty clinics). Even for Celiacs who don’t outwardly react to the levels of gluten in spelt may be doing long term damage to their health by elevating their antibody levels which can lead to risk for serious health problems like intestinal Cancer etc. I would seriously consult with a doctor about usage of this product, as all the specialists I’ve ever spoken to have been very firm about it being off limits. I think a Celiac would be far better off trying the de-glutened wheat starch products used by Europe rather than something which admittedly contains plain old GLUTEN that hasn’t been treated at all. But personally, I’m very happy using a variety of flours mixed together a la Bette Hagman which do not contain any gluten at all to make some really INCREDIBLE bread that is, in some cases, indistinguishable from the real thing. (According to my personal food taster, DH who is not GF and is extremely picky.)

    Good health and good luck to you! As you can tell I feel very strongly about Celiac health and companies that make claims to increase their own profit margins at the risk of their customer’s health.

  3. Thanks for your thoughts Sea!
    I am meeting with a doctor this week and plan to do a blood test to be sure. My fear is, that my body is reacting and I am just not feeling any symptoms. They are genetically 98.5% the same, but maybe the 1.5% difference makes the difference. However, even with cross contamination I feel the symptoms within an hour to 4 hours. With the spelt, I have felt nothing. It is supposed to be easier to digest, so I want to be certain and not damage my body. I should ask Vita Spelt for some research to back up their claims. Really, if they want to promote their product, they should be doing research anyway.
    I too use Bette Hagman’s bread recipes all the time. I wish more research on spelt and celiacs was available, seems like there should be more European info for it, since it is a grain used more frequently over there.
    By the way, love your blog, I subscribe to it and read it all the time!
    Ginger

  4. Thanks, Ginger!
    Let us know how it goes with the doctor, etc. It may take a while for any changes to your antibody levels to register on a blood test- at least with the Gluten Challenge it usually takes at least six months or so of fairly heavy consumption to get reliable test results, so I’m not sure if short term spelt usage will register at this point, even if it is problematic. Do you know the degree of similarity of the oat protein to gluten, by the way? Non contaminated oats are so expensive that it has never seemed worth it to me, but I know some celiacs seem to consume them successfully. All of these things can be controversial, though, *sigh*.
    Hope everything is going great for you, and I’m very happy you are enjoying my blog. 🙂
    -Sea

  5. I will see what I can find out about oats. My local food co-op has said that Quaker are gluten free as they are so large, that they really just do oats, and I haven’t had a problem with them. However there are some comparisons out there that I read sometime last winter that said that sometimes they test over the 20 ppm and sometimes not. They don’t have any info on their website other than because they are transported in bulk that there may be a chance of cross contamination. Lots of people don’t react to McCann’s oats either – I think Trader Joe’s has these, but my local grocery does too. They are cheaper by far than the GF oats, but not nearly as cheap as Quakers.

    I didn’t realize that it could take so long for gluten to register in my blood. What of course I don’t know is, do different glutening events react differently time wise? Or if usually feel glutened in four hours or less, will I always and could spelt be slower as it is easier to digest? What can a chromosome difference of 42 to 28 mean in terms of gliadin proteins?
    Here are an interesting couple of articles about spelt : http://www.enabling.org/ia/celiac/grains.html
    http://www.allaboutbread.com.au/dinkelbrot.htm
    http://wheat.pw.usda.gov/ggpages/topics/celiac.html ( this article is from 1991and is the same as the one above with little charts)

    I would hope that someone is doing research on this as everyone mostly suggests that confirmed celiacs should not eat spelt. Never a DO NOT DO it, except from the celiac community. We need to find someone who wants to do their dissertation on this!

    I have never heard of the Gluten Challenge, do you have more info on that?

    Thanks,
    Ginger

  6. Hi Ginger!
    Oh dear- I’m monopolizing your blog! heh heh. Sorry! I promise not to always be so, er… talkative. Most Celiac sources advise against eating most mainstream American produced oats, especially Quaker, who produces a wide variety of other products and is highly likely to be contaminated with wheat when harvested. I’m active at a yahoo group called SillyYaks and many of our members have personally contacted Quaker and have been advised by the company to avoid their products due to high cross contamination risks. This extends to their rice cakes and corn meal products as well. Co-ops and health food stores often just aren’t familiar enough with Celiac issues to give good advice, even if they are interested in the issue. Therefore with the oats issue, most people that I’ve talked to recommend that McCanns is a company that only produces oats, and so some people have tried them, but they are reported to have fluctuating levels of gluten due to harvesting and shipping practices. Their web site basically says, eat at your own risk. If you are going to try oats,probably the absolutely safest way to do it is to try oats from a reputable company dedicated to producing gluten free oats in a dedicated factory and farm. For me personally, it’s not worth the risk, and I’d just as soon have some quinoa flakes, but some people are really passionate about their oats.

    If it helps, the annual Stanford Celiac Conference is always very clear about saying that Celiacs should not consume spelt, and many of the speakers are doctors who dedicate their lives to researching Celiac disease, so I really feel confident that they have solid research behind their position.

    Now this is a really unscientific way to go about answering your question so feel free to take it with a grain of salt, but when I am accidentally glutened I do find that the form of gluten makes a difference. Wheat results in extreme illness about 3 1/2 hours after consumption while (suspected) Barley takes longer for a reaction.

    And as far as the gluten challenge- the standard diagnostic procedure of doctors in the US begins usually with two types of blood test for antibodies as well as a test for the ability to produce one of the antibodies. (Some people can’t and so were not diagnosed with Celiac formerly because of it.) One tricky thing about this testing is that the patient must be consuming gluten, usually for at least 3 months, better to be 6 months or more, for the antibody test to accurately gauge a response. (Another often misunderstood point that results in some people not being diagnosed who have celiac.) This is sometimes paired with genetic testing for the genes associated with Celiac. The so-called “gold standard” of diagnosis is then, preferably with a 6 month gluten challenge of fairly high gluten consumptions, to perform a biopsy to test for flattening of the villi etc. Evidence of this then results in the most formal, accurate diagnosis of Celiac Sprue that should be recognized by most, if not all doctors in the US. However, countries vary in how they choose to diagnose Celiac, with doctors in some countries requiring relatively light evidence and testing (like italy). Here in the states although experts prefer the “gold standard” method of diagnosis, for various reasons some doctors will diagnose based on less medical evidence. In my opinion, if people feel better not eating gluten, it’s probably just as well that they not eat it.

    Ok, that was quite a lot of typing. 😉 As you can tell, I spend a leetle bit too much time on Celiac boards and at conferences- he h heh, just trying to be as well informed about my health as possible.

    I think your blog is great and hope you keep it up!

    Best,
    Sea

  7. Sea,
    I so rarely get comments on my blog, and I love getting comments, so thanks!. It makes your day sometimes to know others read and think about what you write.

    I do appreciate all the spelt info and will likely go back to my other combos of grains – but I have to hold out hope for beer brewing with spelt as sorghum beer is just not satisfying to me and I have tried 4 brands.

    I just always figured my reactions were from wheat, but now that I think about it, before I gave up beer (I allowed myself to go to beer fests only til Feb) the barley reaction was less and further away. Today I made some French onion soup and used the rest of the whole sourdough spelt loaf and melted raclette cheese on it and floated it in my soup (I want to be good and sure the antibodies show up on Thursday) and noticed that I felt flushed after eating it and remembered that I felt that way last week when I ate the French spelt bread I made. I don’t normally feel flushed after eating. I even mentioned it to my boyfriend – yesterday – before today’s soup. That is a big sign for me but it is not my normal gluten reaction at all.
    I believe I subscribed to Sillyaks long ago and then forgot about it. I will check it out again. I do love my oats and love the flavor of oats but given the Quaker info I guess I will switch to McCanns. Sometimes I simply eat to many veggies to tell if that was gluten from oats or just veggies having their fun.

    Unknowingly I did the Gluten Challenge a year ago May when a lovely biopsy confirmed multiple blood tests.
    Where do you find quinoa flakes? I could be convinced to try those as I do like quinoa.

    Ginger

  8. Hi!
    I’m glad you don’t mind my gabbiness. 🙂
    Sorry, the McCanns thing was a little bit of a typo- I didn’t mean to say that people necessarily recommend McCanns. Some people consume them, but others have reported having trouble with them. The safest thing are those dreadfully expensive specialty gluten free oats. But, personally I don’t choose to consume oats at all since I experience such a violent reaction to gluten and just don’t want to risk it.
    The quinoa flakes are put out by Ancient Harvest. They also make a quinoa corn pasta and quinoa flour. You can find them at the gluten free mall:
    http://www.glutenfreemall.com/catalog/ancient-harvest-quinoa-flakes-glutenfree-cereal-p-69.html
    I generally only use them as oatmeal substitutes in recipes, like oatmeal cookies. Rice flakes can work as a substitute for oatmeal as well. Another company makes flavored quinoa hot cereal packets similar to quaker.
    http://www.altiplanogold.com/
    I have only had a few flavors that were given as samples at Celiac conventions, but they’re really convenient. I really ought to eat more quinoa, as it’s such a high protein, healthy grain. I love Bette Hagman’s quinoa bread recipe- it’s fantastic.
    Good luck on the beer quest. Personally I’m the happiest when I’ve got a nice cold hard cider or chilled white wine to drink- I don’t know if it is that I don’t care for sorghum beer, or just don’t care for beer! haha
    Ok, must do work now. Have a great day!
    -Sea

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