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Food for Thought: Katie Learns About Gluten

Why is gluten such a problem now? In the 2010s, it seemed like elimination diet recipes were all the rage. Then doctors came out against the gluten-free diet, mostly because people were eating more processed foods instead of less (and probably because of pressure from the wheat industry). But for millions of people now in , eating gluten-free makes them feel better. So what has changed about the way humans process their gluten in the last few hundred years? 

gluten intolerance more common

Is gluten good or evil? I’ve received a couple emails just in the past week from opposite sides of the court on this one, and it just demonstrates how controversial and confusing gluten can be — especially the fact that gluten intolerance, gluten sensitivity, and celiac disease seem to be on the rise.

The first asked me if it was a bad thing to add “vital wheat gluten” to whole wheat bread to make it softer. The author was tired of very dense whole wheat bread and had heard that adding gluten should help the rise.

The second was rather the opposite:

Only one thing is bothering me [about your site]:  Whole grain recipes that contain whole wheat flour.

Have you adapted any of your recipes to include other grains such as oatmeal and ground oat flour or corn meal in place of whole wheat flour?

I am looking forward to your response and possibly a new whole grain Kitchen Stewardship®.

I have to realize that I can’t be everything to everyone, and I certainly am not here at KS to create recipes for all allergies and sensitivities under the sun.

Then again, if we end up figuring out that my husband is one of the millions walking around with an undiagnosed gluten sensitivity, I’m sure this reader will be happy to see some more gluten-free ideas floating around here!

What Is Gluten?

Gluten is simply a protein found in wheat, barley and rye. It is what allows the elasticity of bread dough and thus the nice, fluffy rise we like in our bread products, and it also helps bread hold its shape and absorb liquids (Mmmm, soup and toast).

When you knead bread dough, it’s called developing the gluten. That is why my first reader rightfully wanted to add gluten to her bread, to get a nicer rise. It’s also one of the possible reasons so many people are having problems with gluten.

The Gluten Problem

For many people (I hesitate to say “most” anymore after the research for this post), gluten is simply another food. For an unknown number of folks, gluten causes their immune system to go into overdrive.

Celiac disease, a very serious true gluten allergy, affects an estimated 3 million Americans, many of whom don’t even know they have it. (EDIT: Thank you to many commenters who corrected my terminology: celiac disease is not an allergy but an autoimmune disease. The comments – all of them – are definitely worth a read on this post. I learned a lot more!) Celiacs should not have even a speck of wheat/gluten, or they become ill and have awful internal consequences that they might not even be able to feel until later. A study from a year ago in the Journal of the American Medical Association showed that celiacs have a 39% increased risk of death, mainly from heart disease and cancer, than the average population.

In the last 50 years, incidence of celiac disease has increased 400%. That’s quadrupling. That’s intense. I always go right to the “we have better science and are diagnosing people more accurately nowadays” argument with stats like those. This study, however, was based on blood samples from 10,000 random people. All the celiacs in the cohort were undiagnosed. Ugh.

Even more frightening than the increased rate of celiac disease and increased chance of death is this: Many people who do not have celiac disease do have inflammation of the gut related to a gluten sensitivity manifesting itself in many ways. Those folks are 72% more likely to die. Try telling that to your husband as he worries he won’t be able to eat pizza and drink beer again.

It’s possible that one-third of the American population has a gluten sensitivity. Clearly most of us don’t even know it, or our pasta-consuming, sandwich-eating ways would have to change.

RELATED: Food Mood Symptoms of Gluten Sensitivity

The problem with gluten doesn’t really hit the news, because gluten sensitivity manifests itself with many symptoms and causes other health issues. An article in the Huffington Post that was very eye-opening for me said:

A review paper in The New England Journal of Medicine listed 55 “diseases” that can be caused by eating gluten. These include osteoporosis, irritable bowel disease, inflammatory bowel disease, anemia, cancer, fatigue, canker sores, and rheumatoid arthritis, lupus, multiple sclerosis, and almost all other autoimmune diseases. Gluten is also linked to many psychiatric and neurological diseases, including anxiety, depression, schizophrenia, dementia, migraines, epilepsy, and neuropathy (nerve damage). It has also been linked to autism.

We used to think that gluten problems or celiac disease were confined to children who had diarrhea, weight loss, and failure to thrive. Now we know you can be old, fat, and constipated and still have celiac disease or gluten sensitivity.

Gluten sensitivity is actually an autoimmune disease that creates inflammation throughout the body, with wide-ranging effects across all organ systems including your brain, heart, joints, digestive tract, and more. It can be the single cause behind many different “diseases.” To correct these diseases, you need to treat the cause–which is often gluten sensitivity–not just the symptoms.

Of course, that doesn’t mean that ALL cases of depression or autoimmune disease or any of these other problems are caused by gluten in everyone–but it is important to look for it if you have any chronic illness.

Since my husband already has Crohn’s Disease, an autoimmune disease, and going grain-free pretty quickly healed his gut issues this fall, I am becoming more and more concerned that we’re going to have to change our wheat-loving habits around here. (So much for my “Seeking the Perfect Homemade Whole Wheat Bread” series! Actually, I still might give it a shot, but I’ll need to learn about some gluten-free options for poor hubs).

Why Does Gluten Make People Sick?

There are a couple reasons that gluten and humans don’t get along so well.

  1. Wheat was introduced to the European diet (this is mostly a white person’s problem) in the Middle Ages, and a few hundred years isn’t really long enough to completely adapt to a new food.
  2. About 30% of people of European descent carry the gene that makes them susceptible to celiac disease.
  3. Gluten can cause and/or take advantage of existing leaky gut syndrome. When our bodies don’t completely digest the gluten protein, it can begin to sneak through the walls of our intestines and into the blood stream. The immune system, sensing an invader, puts out the “attack!” cry. Unfortunately, other proteins that our body does need are similar enough to the gluten protein, gliadin, that the immune system goes to work on them, too, causing breakdowns in organs, joints, and cells.I just shake my head to even think of all that going on, silently, in someone I love. Once you’re off gluten, you can heal your gut, but of course you’ll have to remove the offending cause.

Why Is Gluten Intolerance More Prevalent?

That 400% increase is a striking number. No matter the genetic tendencies or the leaky guts, one has to ask what we have done differently in the past five decades or so to cause such an increase.

I know I’ve read this somewhere, but alas, I can’t find a source for the life of me (Help? Anyone?). There is a theory that everyone has a total gluten load that their bodies can handle in a lifetime, and when that is maxed out, you’re going to be sensitive to gluten if not totally intolerant or allergic. Many older adults are developing gluten intolerances nowadays, and that is one theory as to why.

If exposure to gluten causes gluten issues, here’s what we’ve done to encourage the problem:

  1. Our new wheat: In our quest for lighter bread, the wheat we generally eat in America today has been hybridized to create a much higher gluten content than in centuries past. EDIT 3/2013: I just read the opposite, that modern wheat does NOT have more gluten, but yet it has had its protein structures altered in such ways that it impacts our digestion of wheat in general, which presents itself as a gluten intolerance. I can’t say I understand all the science, but you can read the short article HERE for yourself.
  2. Food processing and gluten: Gluten is added to many things in the food processing industry and is one of the fake meat options for vegetarian fare.
  3. The whole wheat bread phenomenon: The government’s push toward whole grain breads, although well-intended, has resulted in a whole generation of  people eating extra gluten. Any whole wheat bread in the store, and many good whole wheat bread recipes, include additional gluten over and above that which is already in the wheat.One great breadstick recipe that I love because it goes from finding the recipe card to serving the breadsticks in under an hour and a half actually calls for 6 Tablespoons of additional gluten. That recipe makes me nervous now. How much extra gluten are we all consuming with this new trend?

Food Renegade posted on the rise of gluten intolerance a while back, quoting the Weston A Price Foundation’s Chris Masterjohn on some more systemic dietary possibilities for the cause of the massive increase in gluten intolerance today:

  • Some people may possess as-yet unidentified genes that cause their immune system to think an undigested fragment of the gluten protein looks like a microbial invader.
  • Some people who consume gluten may have dysbiosis — damaged gut flora — from antibiotic use or consuming foods that they cannot digest. Feeding infants grains before they are able to digest them may raise the risk of dysbiosis. In this scenario, the immune system may see the products of microbial invasion from the dysbiosis and the undigested gluten fragment at the same time and be tricked into thinking that the gluten fragment is the microbial invader.
  • Low-nutrient diets may interfere with the body’s ability to suppress immune cells that are capable of attacking harmless proteins. For example, one of the chemicals the body uses to suppress these immune cells is TGF-beta,c which is upregulated by vitamin A.d A diet deficient in vitamin A, then, might undermine the body’s ability to keep its immune system from attacking harmless proteins like gluten.

UPDATE: I also wrote this article on the changes in wheat and the rise of gluten sensitivity.

What Do We Do Now?

If you think you might have a gluten sensitivity, you can test yourself by eliminating ALL gluten from your life for 2-4 weeks (including lipsticks, soy sauce, shampoo, potentially contaminated oats, etc. Do your research.). If when you try gluten again you feel horrible, that’s a pretty clear answer. (These three diets all eliminate gluten and help heal the gut.)

If you’d like to simply take some precautions to help avoid developing a gluten issue, you can watch out for added gluten in your life. Some practical tips:

If you love anecdotal evidence like I do, you’ll be amazed at what soaking, sprouting and souring grains did for Wardeh’s daughter’s gluten sensitivity in this story.

Curious if your body doesn’t love gluten? 

Bottom Line: A general blood test will NOT necessarily show if you have a gluten sensitivity.

There are 17 proteins in wheat, and you could be sensitive to any one of them. The standard gluten allergy blood test only tests for the most common and skips the other 16.

Here’s how to do an elimination diet, my friends – if you feel better, you have learned something. Something very important. (My husband did a blood test which back negative, we decided the doctor knows zilch about food and health, and we learned through experience that he most definitely, 100%, has a gluten sensitivity.)

Have you ever learned anything about your body and food through an elimination diet?
Unless otherwise credited, photos are owned by the author or used with a license from Canva or Deposit Photos.

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88 thoughts on “Food for Thought: Katie Learns About Gluten”

  1. I forgot to say. I know an AMAZING Doctor in the Minneapolis area. Dr Kevin Conners, at the Upper Room Wellness Center. He specializes in the treatment of autoimmune disorders.

  2. Thank you for this post on gluten and autoimmune disorders. I was diagnosed with Hashimotos last year and my diet has changed radically. It is very possible to eat a gluten-free diet. I even try to go grain-free most of the time so as to avoid my grain cravings. Thanks for your posts. I have enjoyed learning new things!

    1. Katie Kimball @ Kitchen Stewardship

      I’ve not read anything about that specifically, but I wouldn’t be shocked – seems like a great many food issues are connected, somehow…

  3. You must understand that there are multiple types of gluten sensitivities. You can get tested for Celiac disease, and the test can come back negative, and you can still have a sensitivity to gluten. Gluten breaks down into a variety of different sized amino acid strands, and a person could develop sensitivities to ANY or ALL of them. The typical test that is done by medical doctors only tests for the antibodies associated with Celiac. It’s a VERY incomplete test. Cyrex labs offers up-to-date, and complete testing so that you can know if you’re reacting to any portion of the gluten protein. They also offer a test to see if you have any cross reactions with other proteins (like coffee). A cross-reaction occurs when your body responds to a non-gluten protein as if it were gluten. Once you have an auto-immune condition, it’s liable to “spread” to new tissues, it’s not necessarily confined to the original tissue attacked.
    On another note, gluten isn’t bad for people unless they have a sensitivity to it.

    1. John,
      Thanks so much for this note! We are actually considering testing my DH with Cyrex Labs, but his doctor was less than helpful in connecting us. We need a new doctor…
      🙂 Katie

  4. Johnlyn Wgs Most bread recipes I know of don’t add sugar though…I just add butter, mmmmm! 😉

  5. Johnlyn via Facebook

    “Why would God give us a perfect food, packed with nutrients, protein, and fiber, if He didn’t intend for us to eat it?” … if this is the perfect food from God, why do we have to add sugar to it to make it taste good?

    Not trying to start an argument at all, just trying to understand how this could be the perfect food?

    1. I don’t believe God gave us ANY perfect food. Or rather, the food in the garden of Eden was probably perfect, but not the food here. We live in a fallen world.

  6. Loyda via Facebook

    I think some of it also has to do with how people are no longer eating one serving… God didn’t give us all this food just to gorge on it then sit on the couch…

  7. Terri via Facebook

    God didn’t give us the wheat that many find in the stores today. He gave us spelt, and other grains, but what we find in stores is GMO, and/or hybrid.

  8. Jennifer via Facebook

    I am mostly GF now that I’ve been diagnosed with Chronic Lyme Disease. This debilitating disease masquarades as many auto-immune disorders. Many think they have Fobro, CFS, MS, Lupus, etc. etc. and actually have Lyme. they learn to treat the symptoms, rather than get a proper diagnosis. Since gluten sensitivity is on the rise, and most with Lyme do much better without it, it does correlate with Lyme being on the rise. It is now of epidemic proportions though most don’t realize that’s what they have. I would suspect that the GF numbers would continue to rise. Too bad that allopathic medicine still does not recognize this 🙁

  9. Kari via Facebook

    Rather than going permanently wheat free, have you considered healing your husband’s gut with the GAPs diet and then returning to soaked, sprouted, soured wheat? Personally, I’m not convinced wheat is the cause of the problem. I think it’s all the toxins we are exposed to which cause our digestive systems to malfunction. Why would God give us a perfect food, packed with nutrients, protein, and fiber, if He didn’t intend for us to eat it?

  10. Wow.
    I have always had an inkling that maybe going GF is something I should do because of ‘mysterious’ illnesses and chronic conditions with (seemingly) no origin. Recently, I happened across Musings of a Housewife (Hi, Jolynn!) and I felt compelled to revisit this idea. Out of nowhere, my husband says to me “I think we should think about going GF.” We have NEVER discussed this before. Today MOAH sends me here with all of this great info. I think God must have a plan…

    1. Jen, I hear ya. We’re doing grain-free again for Lent b/c the holidays weren’t exactly good for hub’s digestion. Good luck and God bless! 🙂 Katie

  11. Sorry if this double posts, it didn’t seem to go through the first time.

    I wanted to add some info to this. It’s an excellent post.

    A 2006 study showed that gliadin which is a component of gluten, acts on a chemical called zonulin. Zonulin decides how big the pathways in the intestinal wall are.

    If these pathways get too big, then larger molecules or partially digested food can pass through into the blood stream. It’s theorized that this can cause immune responses that lead to food sensitivities, IBS, fibromyalgia, and all kinds of issues.

    1. Shawn,
      Fabulous info! Sorry I didn’t get to comment moderation in a very timely fashion this week, but I just changed the settings so that no one is stuck in “approve” mode anymore. Thank you so much for your comment – I hope you stay around to join in the soaking grains exploration with your knowledge! 🙂 Katie

  12. The whole wheat/gluten thing IS very controversial. Thanks for the pros and cons.

    I wanted to add that a 2006 study showed that gliadin which is a component of gluten, acts on a chemical called zonulin.

    Zonulin decides how big the pathways in the intestinal wall are.

    If these pathways get too big, this is thought to cause “increased intestinal permeability” or “leaky gut.”

    When larger molecules can pass through it is thought cause immune responses that lead to celiac, food sensitivities, IBS, and all kinds of issues.

    Thanks for the info.

  13. Pingback: So tell me again. WHY are you going gluten-free? — Musings of a Housewife

  14. Musings of a Housewife

    This is the best synopsis of the whole gluten issue that I’ve ever read. Consider it a springboard for a post of my own!

  15. Glad to read this! I’ve recently gone GF, and look forward to a time in the future that I can re-add wheat back into my diet. For now, taking gluten out of my diet is giving my body a break and is relieving fibromyalgia symptoms for me. I’m taking this time to read up and learn about sprouting and sourdough so that MAYBE I can add wheat back in with that angle, for the whole family!

    Keep great articles like this coming!

  16. I tried to read all the posts quickly… did anyone else mention this? In lieu of beer, has your DH tried cider? Since before TTC and pregnancy and BFing for 2 years I had no beer [knowing the results from my elimination diet while BFing], and possibly 2 half glasses of red wine total… After all that time I just wanted to enjoy SOMETHING with my husband during a BBQ on our new patio. I found a certified GF cider, and one bottle suited me fine… I can’t remember the brand [woodchuck?] and don’t know what happened to the rest of the 6pack. Not that it matters since we’re PG again. Well, I’ll let you know in a few years when I can try it again!!!

  17. I too had Crohn’s, but was able to heal myself by changing my diet. So far I am still able to eat wheat. However I do sprout, soak or sourdough about 95% of the wheat that I eat. And I don’t eat nearly as much as I used to.
    I have been told by a couple of very reliable sources that one of the reason’s why wheat/gluten has become such a problem for so many people is because it has been tampered with too much. These resources believe that there is no wheat that is not GMO–even if it say’s “organic.” They say it just doesn’t exist. Wheat has been messed with for the last 30 years. So unless you are lucky enough to have 30-40 year old wheat sitting in your basement, that you could then take to a field and grow, you don’t have “real” wheat.
    I would like to try that. Find some 30-40 year old wheat, grow it, harvest it, and use it to see the difference.
    Anyone ever done that?
    I actually have a friend that is a farmer, so now I just need to find the old wheat.
    It is on my list of things to do.

    Katie, we have enjoyed your sourdough bread recipe from Wardeh’s eCourse!

    1. Tiffany,
      You know I’d be all about that. I’ll be on the lookout for 40 yr old wheat for ya… 😉

      I think I came across your cookbook back whe nI was just getting into blogging, maybe – looks like you’re doing great, and I’m checking out your angel food cake recipe now! 🙂 Katie

  18. Wow! As far as I know, I do not have a gluten issue, but I’ve been running into research like this quite a bit recently. I am glad there are notes about sprouting, because I come from that “camp”. Thanks for the information!

  19. Susan Alexander

    I wanted to agree that the blood test (and even the DNA test) are not infallible. My mother has a gluten sensitivity and tested negative on the blood test and DNA test (she paid for it because she was worried about passing on the gene to her grandkids). She is definitely gluten intolerant though. It took being off of it for a very long time and then eating a few pieces of Ezekial bread to show her (she was up all night with a “stomach bug”). She now takes it pretty seriously.

  20. I had a endocrinologist tell me many years ago that he was certain I had Celiac Spru, however when he tested me it came back negative. He told me he didnt care what the test said.. I was highly sensitive and I should completely eliminate it from my diet. Not long after I went on Atkins diet and within 4 days I was a completely different person.. I had amazing energy, I became “regular” something I’d never been in my entire life, and the extreme joint & muscle pain and brain fog completely disappeared! It only took me 4 days..
    I fall off the wagon occationally.. but the pain becomes so severe I remember why I should eshew gluten completely.. My mother has also gone gluten free recently since she found it helps her Crones Disease tremendously.

  21. Katie this is an excellent post! Holy moly you’ve done your research so you’ll be ready to help your husband if gluten isn’t his friend! Thanks for this resource.
    My husband has had celiac for 7 years. His sister also has it (for 28 years) and she also has scleroderma which is an auto-immune too. This is a recent diagnosis and I’m convinced it’s because of all of the cross-contamination in her household. No one else ate gluten-free, she toasted her toast in the same toaster, and many people with celiac have other undiagnosed sensitivities… My son was diagnosed with a gluten sensitivity last year so we’ve decided to be entirely gluten-free. It’s been an interesting journey but we’re all feeling great.
    Your post is the best I’ve read! Thanks so much!

    1. PS I think that Doctor is terribly misinformed! It’s a shame that he’s sending that message out to patients who may not have the proper information about celiac disease.

  22. [email protected] Alternative Mama,
    One of my sons had that same rash around his mouth. He was also spitting up several times a day and his eczema flared up. We cut out gluten and then all dairy (including butter and cheese) and the rash went away, he stopped spitting up, and his eczema improved. You might want to remove gluten and see what happens.

    The pediatrician said it was just a stomach virus. He said very few people have Celiacs. Interesting that the “virus” only comes when I give my child dairy or gluten and goes away when he’s not had it. I don’t know whether it’s Celiacs or a sensitivity. I have been told the tests both for Celiacs and food sensitivies or not accurate.

    I have several food sensitivities. I keep testing them to see if I’m over it, but my reaction to the offending foods seems to get worse each time I have them. My reaction usually includes horrible digestive issues, brain fog, fatigue, headaches.

    I’m wondering for me if I have a wheat sensitivity and not gluten. I can have regular oatmeal and other foods with gluten and not react. After reading your article, I wonder if it’s still affecting my body and will cause problems later.

  23. All right, I already have a million tabs open in Firefox…! 🙂

    I went GF back in July due to having Hashimoto’s disease (autoimmune hypothyroidism). Due to their similar structure, the body confuses gluten with several thyroid proteins and attacks your thyroid. So, despite having no GI symptoms, off wheat I went.

    In my quest for knowledge, I came across a radio blog interview of Dr. Thomas O’Bryan. The topic was gluten sensitivity and Celiac disease. I would highly encourage you to listen to it. I’m no expert, but I came away with the understanding that gluten sensitivity is just the precursor to Celiac; sort of like stage I vs. stage IV cancer.

    Dr. O’Bryan’s aunt had Celiac’s and as a result he’s become an expert on it. He gave stats on the increased risk of death if a Celiac had gluten as little as once a month. He talked about a CD study on a large group of blood samples from WWII soldiers that was miraculously preserved. He said problems show up last in the blood, so the blood test will only be positive if the “shags” in your intestines are mostly worn down and you are in serious shape. Saliva is where it shows up first. Fascinating stuff.

    Search the iTunes store for Underground Wellness, then look for the July 7, 2010 show with him. Since I know you like to see the research, his study references are posted on the UW blog web site here:

    Oh, and so your hubby can have pizza, check out the Artisan Breads in Five blog post on gluten free dough. I have the book and both the “GF crusty boule” dough and the “GF olive oil dough” are recommended for pizza crust. I just made my first batch of boule dough last night, so I haven’t tasted it yet, but it smells good! They have a video of the GF dough process up too now. It was easy. They have quite a few GF recipes now, including…(drumroll) cinnamon buns!

    Oh, and here’s a link to a DF GF sourdough blog I stumbled across. W-O-W.

    (and I have no connection to any of these, just passing on good info) 🙂

    1. Dawn,
      And now I have 2 more tabs open in my Firefox (no wonder it always crashes!!). 😉 Thanks for the info – my friend Donielle at Naturally Knocked Up also did a podcast, maybe with that same doc, that I’ve been meaning to listen to. If DH turns out to be sensitive, hopefully he’ll be motivated enough to listen to them himself, since he’s the one with the ipod and drive to work…

      Thank you!!! 🙂 Katie

  24. It’s interesting that you mention gluten sensitivity might be caused by too-early exposure to wheat. Might some of the increase in gluten sensitivity be due to the popularity of Cheerios, etc., as weaning foods? As well as introducing solids so early, before six months old.

    I’ve decided to leave the baby off grains for quite awhile … perhaps even till two. My husband was hospitalized at two for a mysterious GI illness, and now he has trouble with grains … I wonder if perhaps he’d just started something new? His doctor told his mom to wean him as a result of this … bad advice, huh?

    1. Oh, man, Sheila…you are certainly on a journey. I’ll keep you and your fam in my prayers! 🙂 Katie

  25. After I stopped eating gluten for one week I felt a HUGE difference.

    I don’t think it’ll take 2-4 weeks for some people.

    The same holds true for our “milk sensitivity” test….one week and we knew our son couldn’t drink storebought milk without having a stomach ache and a headache.

  26. I’m glad you mentioned Chris Masterjohn and the dysbiosis and dietary ideas. I’ve been gluten free for 8 or 9 years, and my children have been raised gluten free also. Up until recently they’ve had no dairy or soy (still no soy except for some soy sauce and miso) and I’ve avoided dairy and soy. This summer, after 4-5 months of adding bone broth, cod liver oil, and probiotic foods and drinks, we tried raw cultured milk and seemed to do fine with it in moderation. We’ve also been experimenting with injera (Ethiopian flatbread) that’s part teff and part barley and is well fermented. The jury is still out on this because while we don’t have any immediate reactions, the kids and I have been getting colds or allergies or something lately, and I wonder if that might be part of it.

    I’ve thought and read a lot over the years, and it seems to me that for people with an intolerance rather than an allergy or celiac might be well served by trying to address underlying systemic problems rather than eliminated gluten for life. Otherwise other foods often start to cause reactions and you end up cutting out more and more. Of course, this could just be my way of avoiding going completely grain free (I’m a former vegetarian and a meat and vegetable diet is so unappealing!), but it can’t hurt to focus on getting adequate nutrition and lots of beneficial organisms in your gut!

  27. Fantastic post. Comprehensive and well written. I’m surprised people have commented you don’t have gluten free bread recipes. It is, afterall, your blog. Anyone can Google what they are looking for and find it. Onward……while I’m not an expert on gluten I have learned tons lately. Here we go:

    Blood tests are inconclusive for sure, but they are a starting point.

    Gluten intolerance, sensitivity, and/or Celiacs disease, can be deadly down the road. Anyone who says differently is misinformed.

    Often, people who think they are gluten intolerant have other issues. Sometimes its yeast, candida, preservatives, certain food combinations. Food diaries and self reflection are often better diagnostic tools than we think.

    Food/digestive issues are often not simply what we are eating, but also what we are not eating.

    I have only recently discovered your blog and am happy I have. I love the writing and information. Thank you. One thing I’ve learned about diet and nutrition is that the only real authority is our own body. If we tune in to what it is saying instead of only listening to supposed experts, we will be happier and probably live longer.


    1. Thanks, Jackie! You give a good reminder that we really, really need to be sticklers about keeping a food diary…

      🙂 Katie

    2. This is helpful! I’ve suspected candida or a preservative as well but have no idea how to figure it out. I will start keeping a food journal. In the meantime, how do I approach this w/my diet?

  28. Thought I should share a couple of resources on Nutrition Response Testing/Technique.

    This Dr. from Los Angeles gives a good explanation of it:

    And this is my chiro, Dr. Woods’ in Alexandria, VA:

    Hope that’s helpful.

  29. Katie,

    Thanks so much for taking the time to research write all this. I needed a little fear persuasion to go 100% gluten-free and my husband has some homework to read… =)

    6 years ago, I had to go off of gluten when my first daughter was 6mo b/c she had blood in her stool. The bonus was that it cleared up my digestive system that had slowly deteriorated over the last 10 years! Can I just get an “Amen” for smoothly working digestive tracts?

    Moving to a traditional diet a la Nourishing Traditions at the same time helped heal me as well, so I slowly went back on gluten (butter croissants, come to mama!). I was doing great, but then slowly I started to feel other symptoms, like a mild headache. Now I get this hot flash like feeling in my face and head. I’ve got to go off 100% but it is very difficult as many of us know.

    I’ve been making sourdough bread out of sprouted spelt flour and just crossing my fingers…

    One recommendation that I would make is to find a chiropractor in your area that does Nutrition Response Testing. They literally set a vial of gluten (and a million other high-allergy foods, toxins, chemicals, etc.) on your body, push your arm down while you resist and if you’re weak than you’re allergic. Very bizarre, but I have experienced it happening. You can also bring in foods and have them test in the same way. I plan to do this with my bread.

    Lastly, through NRT, I have also found out that I am allergic to corn (*sticking tongue out*), except for sprouted corn tortillas (thank you, Jesus). My related symptom was having trouble with my lower back. According to my brilliant chiropractor, your digestive tract shares the same nerves as your lower spine, so they are often interrelated when symptoms manifest.

    TMI, I know. But just in case it can help anyone else who is having similar issues…

    1. I’m so glad you shared all this. I have a lower-back problem (just lots of pain, never seen for it or anything), and this just makes a lot of sense!

  30. Just a word of caution. I have a friend who has told me more than once that going on and off gluten is dangerous becuase of the body’s reactions. Her daughter is a Celiac and she has done a TON of research. It is a passion of hers. She maintains a website with a lot of information if anyone is interested.

    1. Martha,
      Do you mean even if one is NOT gluten sensitive (like me), that going off gluten could be harmful? I did, of course, for a few weeks with my husband, although I’m back with it now. ??? Thanks! 🙂 Katie

      1. I know your question has been hanging out here for a while, so perhaps you won’t see this, but…

        Dr. Tom O’Bryan addressed this with an article. Here’s the link: (scroll down to find a link to “Do I Have to Re-Introduce Gluten…”

  31. I have to agree on the others on the validity of the blood tests — they aren’t that accurate. However, we’ve had good results with stool tests from Entero Lab in Texas ( Both myself and my oldest child have used them. I am not affiliated with them in any way — just want to help those that may be struggling.

    Also, it could take 6-9 months for the gluten to clear your body, not always see results in 2-4 weeks. My doctor had me do the gluten sensitivity stool test from enterolab due to my anemia (which was not helped by taking extra iron for months). My gut was not absorbing any nutrients. I had no digestive issues, so it came as a complete shock when my test came back positive. You don’t need a doctor to prescribe the test, just visit their website and order the kit. Once you send it back, you get the results via email in 2-3 weeks.

    Also, have to add that spelt is on the “No Go” list for those that are avoiding gluten. Even if it may be lower, it is definitely one to be avoided.

    I also agree with the person that commented about allergies being very different than an intolerance. Your body does react in different ways.

    For more info, google Dr. Rodney Ford (he’s a pediatrician in New Zealand — I heard him speak a year ago here in VA).

  32. We are doing a gluten-free trial at my house these days. I hate to admit that I seem to feel better when I eliminate – or nearly eliminate – gluten. While I suspect my husband would also feel better, he won’t try it.

  33. Kate @ Modern Alternative Mama

    Well, now you’ve got me wondering. We eat only sprouted grains — as you know — and at least 1/2 our meals are grain-free. I was satisfied with that. But my kids have this curious red rash around their mouths which seems to come and go. I haven’t linked it to anything yet. I’m wondering if it’s gluten? Unfortunately we still eat “compromise” meals every couple of weeks and it could just as easily be related to that (on that subject, I feel my blood sugar spiking terribly whenever I eat any white sugar or flour now, and I basically can’t even do it anymore. Going to have to be strict and cut out all the compromise foods because they make me feel yucky!). Time to get stricter…even when I don’t wanna. Sigh.

    1. Serene in Singapore

      You may want to remove MSG from your diet as well. Even MSG that occurs naturally in foods such as mushrooms and tomatoes.

      Dd#1 and I will have a red rash, peeling and even swelling occasionally if we eat foods with MSG.

  34. There’s a school of thought that says that people with autoimmune conditions should eliminate not only gluten, but all grains, legumes and dairy. I have Hashimotos thyroid disease, so this would be me. I’ve been gluten-free since the first of the year, and am about 98% on everything else except dairy. Talk about addiction!

    Robb Wolf is a good resource on this (The Paleo Solution book & podcast – but watch out for the occasional swear word in the podcasts).

  35. My daughter has been gluten free for over a year now. We never tested her, but took gluten out of her diet and saw the symptoms clear right up. I too heard that the tests were pretty inacurate and didn’t want to subject her to them or spend the money when she tested so positive with the elimination diet.

    In the past year she has grown so much! One doctor (and I don’t know where I read this) said that gluten affects growth hormone. This seems to have been true for her.

    On the bright side, after a steep learning curve, gluten free is fairly easy now and I actually like how we eat much better now. Cutting out a lot of bread means eating more veggies, grass fed meat and other grains like quinoa and teff that are nutritious and taste really good!

    We also buy sprouted rice flour. They have a really good pizza recipe. My gluten eating husband and son like it too.

  36. You might want to check out this post: And other posts at this blog.

    This is a doc who was mainstream cardiologist, but found that following the standard protocol was not helping his patients. He changed the way he treats folks & has a very high success response in folks who follow his dietary & supplement recommendations.

    He basically says that folks should not eat wheat or corn starch (or most other grains, when you pin him down). But he found that this “ancient grain” emmer, which was more likely to be the wheat eaten 150+ years ago (back to Biblical times) does not seem to increase insulin in your blood the way that the hybridized wheat that is common now tends to cause increase. Gluten is the protein that makes things rise & be soft, but it is not the protein found in the ancient grain. Nor is our current wheat as high in protein as emmer was.

    Technically speaking, celiac is not an “allergy.” It is more of a defense mechanism that causes damage in the body. A true allergy causes other symptoms. Not trying to rip you here, simply saying that “allergies” and “reactions” don’t fall into the same category. 🙂

    1. Kathryn,
      Thank you – I have seen that blog before, very interesting stuff. My MIL has diabetes and heart disease, so this stuff definitely runs in my DH’s family.

      Thanks for clearing up on the celiac – I thought celiac was an allergy and that sensitivities were a bit different. I wonder what we’ll do when the test comes back if it’s so unreliable anyway???

      🙂 Katie

    2. For those who are interested – Dr. Davis wrote a book (just published 8/31/2011) going into all of that in more detail. “Wheat Belly” I just got it from the library, and am about halfway through – it’s fascinating. My family is now attempting to go GF, not because of any diagnosed sensitivity, but because I’m convinced he’s on to something and I think we eat far too much wheat (and really – starch of all kinds).

  37. Donielle @ Naturally Knocked Up

    There is supposed to be a lab starting to do saliva tests for gluten antibodies and it’s supposed to be much more accurate than the blood or stool tests. We haven’t bothered with testing since it seems to be ‘off’ so much for others, so we go by symptoms. They disappear when we eat gluten free and come back within months of eating wheat again. That combined with the fact that we have many family members with auto immune diseases as well as a couple with diagnosed celiac, we’re staying away for now!

    In the podcast I did with Dr. Tom O’Bryan ( he mentions that most doctors don’t have the training needed for diagnosing and treating celiac and silent celiac – thinking it’s just a ‘digestive’ issue when in fact it can cause degeneration of any part of the body and is a big part in auto immune disorders and even mental illness.

  38. I have been gluten free for 15 years and all my children have gluten sensitivities. 2 had positive blood allergy tests. As someone else mentioned, blood tests are only 50% accurate. There is a lot more awareness about gluten today than 15 years ago. Due to different allergies in our family, we avoid wheat, gluten, eggs, dairy, soy, and corn.

    I have enjoyed your last posts on gluten and wheat. I would love to see you do a post on corn and all the places corn hides!

    Thanks for all your detailed research!

  39. I guess this was a bad morning to send you a bread recipe, huh? 😉

    I hope it all works out with hubby, however it works out.

    1. Beth,
      I still am hoping I get to go back to baking bread soon! If not for Dh, hopefully for kids and me, although we’ll have to study our kids, too, b/c I’d hate to subject them to years of wheat if in fact they inherit something from their dad. Easier to just cut it out now, you know? 🙂 Katie

  40. (as always) a very comprehensive post! While gluten free works for many celiacs, the SCD (GAPS) diet works at healing the gut so later celiacs can have gluten again.

    I believe that the celiac rise is correlated with the rise in autism- and both originate in the gut, from overuse of antibiotics, too little fermented foods, and too many toxins. Not that this is your husband’s problem now, but it can even be passed down through the generations.

    1. Our immune system has memory B cells that recognize the proteins of wheat and “rally the troops” to begin producing antibodies again. Immunizations work via this principle. My understanding is that even if a leaky gut has been healed and sealed, just having wheat in the mouth can alert the memory B cells again. If I were Celiac, I would be very cautious about eating gluten again. Is it worth the increased risk of disease and mortality? What will further research reveal that we don’t know now?

  41. Great thorough post Katie!

    Just a question, did your hubs get a blood test while he was still gluten-free? That could give a false negative result.

    Also, the blood tests are not very accurate. I had both a blood test for Celiac, and one for food allergies, both showing up negative for wheat. I definitely have Celiac though, and have to avoid even tiny amounts (cross contamination).

    1. He is pretty much GF right now, has only had wheat last Sunday night and before that a few times a week or two ago, when he had a bad reaction. ??? That’s a good point, though. Thank you! Katie

  42. Be careful of the blood test. They are notoriously inaccurate. The only way to truly diagnose celiac is with the GI scope, which is not a simple thing. My child, at 18 mos., had a positive celiac test after a four week run of vomiting and diarrhea. We eliminated gluten form the diet as much as possible (as newbies to the idea), and he retested as negative, and his symptoms were gone. However, that appears to be coincidence or just a minor relation, as we were advised to add back gluten to see what happened, and indeed, he did fine. A third celiac test, a few weeks into the normal diet, was negative again, and he’s had no trouble since. The doctors felt that it was likely that the whole thing was a virus, and that the gluten problem was coincidence, or at most, it was harder to digest than the rice and such we used instead. Anyway, do your research on the reliability of these tests, and proceed with caution. All the best!

    1. What I’ve read is that gluten intolerance can be detected in the saliva or stool before it can be found in the blood. Most Gluten sensitive people return negative or inconclusive results upon Celiac testing. The correct term for these people is Non-Celiac Gluten Sensitive (NCGS). There’s also a new blood test that was recently approved by the FDA that is suppose to be a more accurate test for gluten sensitivity. I never had any of the “typical” symptoms for celiac disease. My most prominent symptom was frequent and debilitating migraines. In my case, they did the saliva test and the results showed a level of the antibody that was 4-5 times above the normal level. I have since also discovered that one of my nieces has also been found to be highly sensitivity to gluten. Other family members also exhibit symptoms that make me think there is a high probability that they, too suffer undiagnosed gluten sensitivity. My family’s genetic stock comes from that part of Northern Europe where the gene that makes one susceptible to gluten sensitivity is most prevalent. There is now also a genetic test to see if you have the gene. While it’s not definitive proof, it can determine if you are at greater risk for developing the sensitivity. Some studies suggest that it takes a combination of the gene and some environmental exposure or experience to trigger gluten sensitivity.

  43. I love your research and how generous you are to share it with us.
    Have you given any thought to how mass vaccinations may come into play? I believe many of the auto immune issues that are on the rise are a direct result of all the immunizations we have had to endure. Even though gluten seems to be a trigger, I wouldn’t be surprised if it was the fact that someone’s immune system has been tampered with via vaccines, that puts their system in overdrive in the first place.
    Everything is so complicated! Aaak! 🙂
    Thanks again for all you do.

  44. Lots of good information and research here! 🙂 I am all about spreading awareness of gluten issues.

    Perhaps it would be helpful to clarify between celiac disease, gluten intolerance, and a gluten/wheat allergy?

    True celiac disease is not an allergy. It is an autoimmune disease – the body reacts to any amount of gluten by tearing up the small intestine. Advanced cases have flattened villi and severe malnutrition, no matter how healthy of a diet is eaten. The term is used rather loosely, but you’re right that cross-contamination or cheating is terrible for true celiacs. I’ve heard that, regardless of the duration of symptoms after cheating, the internal damage takes 6-8 weeks to heal. So, cheat every other month, and you might as well not be on the diet at all. True celiac disease is diagnosed by a blood test. Since it is not an allergy, it won’t show up on traditional allergy testing – it is a different type of antibody involved. And, you have to be eating gluten every day for a month previous for the blood test to be accurate.

    A lot of people who call themselves celiac actually have a gluten intolerance. It isn’t clear yet whether gluten intolerance can develop into celiac disease, but I think that these are the people who can ‘cheat’ on the diet and just feel lousy for a while.
    However, the medical community at large does not acknowledge gluten intolerance (especially if they are not ‘up’ on the cutting-edge research). So, you’re kind of on your own for self-diagnosis of gluten intolerance, and nobody is really sure about the long-term health consequences of gluten intolerance (cancer risks, etc, compared to celiac disease).

    Wheat allergies are another thing altogether – different type of antibody involved, as I mentioned. It’s, well, an allergy. 🙂

    Now this is a particularly controversial point, but I do recommend for testing. They do stool testing instead of blood testing. The results are much, much more accurate than bloodwork, although it doesn’t tell you if you have gluten intolerance versus celiac disease. It just tells you whether you’re reacting to gluten. For people who aren’t sure that their bloodwork was accurate, Enterolab is a good way to go. I did a ton of research on them before my husband would let me spend the money, and we were both satisfied that they’re reputable and accurate, if it a bit renegade. 😉 The traditional medical community, of course, is skeptical.

    So, that’s my understanding of things after 2.5 years of research. It’s a confusing field with conflicting information and just plain ignorance in the medical community. (Though I had ALL the classic symptoms of celiac disease, I couldn’t convince my doctor to test me, which is why we eventually went the Enterolab route. On the diet, I went from being an invalid to a normally functioning adult in two months!)

    1. Elizabeth,
      Thank you VERY much for this information. I love that you helped me understand the difference between celiac and a wheat allergy. I’ll wait until the bloodwork comes back and then send hubs to read this post, I guess… 🙂 Katie

  45. Thanks so much for this series Katie. I’ve actually never even looked into gluten since no one in my family has that problem (yet). The 400% increase is incredibly shocking. I would love to look at more examples of how people ate 50 years ago. Think anyone wrote out their weekly menu plan and passed it on to their loved ones? 🙂

    After this post, I’m pretty excited to broaden my horizons and try a few different types of flours. I want to try sourdough. My husband jokes I’ve always got something “rotting” on the countertop when we go to bed at night.

    Care to share what you think could cause that 400% increase, even if you haven’t found the research yet for your theory?

    1. Shannon,
      LOL about the menu plans from 50 years ago! I wish!

      My theory? Who knows…could be vaccines, increased wheat gluten, introducing solids earlier, modern food processing, eating too much whole wheat without traditional preparation… We live in such a complicated world, and autoimmune diseases in general are on the rise without any particular proven cause. I just hope I can figure out the best way to feed my family…

      🙂 Katie

    2. Shannon-I’m wondering if it might be related to all the processing that food goes thru before it reaches the consumer. One of my thoughts-it used to be that you never heard of lactose intolerance and then “everyone” had it (exaggerating, of course). Recent theory holds that the intolerance is a result of pasteurization that kills the enzyme lactase, which helps to break down the lactose. Could the same type of thing be happening with wheat? Is processing removing a vital component to digesting it? Just a thought I had as I was reading Katie’s post.

      1. There is a doc i follow, Dr. William Davis of the Heart Scan Blog, who speaks of wheat frequently. This is his take on why wheat is not good for us now,

        Basically, he says that even if it is not GMO, wheat has been so hybridized (in order to increase gluten & the “fluffiness” of the finished product) that it is almost unrecognizable to what our ancestors ate. Much, much lower in protein.

        He ordered some of this “ancient” wheat, & with limited experimentation, found that it did not seem to raise blood sugar as 2010 wheat does. He even thinks it might be possible that some folks who are gluten intolerant may be able to eat this type of wheat.

  46. Emily @ Live Renewed

    Great article Katie!
    I too wonder if my hubs has a gluten intolerance – he actually had an upper endoscopy a few years back because he was feeling so badly, and they told him that he didn’t have celiac’s, which I guess is a good thing, but I still worry that he is intolerant. But he’s REALLY not on board with giving up pizza, bread or beer.

    I have one questions about your stats. You say that those with celiac’s are 39% more likely to die, and those with intolerance are 72% more likely to die. I’m just wondering compared to what – I mean, we’re all going to die eventually, so what does it mean “more likely to die”? And why are those with just an intolerance more likely to die than those with the more severe celiac’s? Just wondering what that risk really means.
    Thanks! 🙂

    1. Actually, you don’t have to give up beer or pizza as there are gluten free versions of both. There are a lot of resources available now that provide recipes for gluten free versions of the foods you’re use to including pizza dough. There are also a number of manufacturers that are now producing gluten free pizza dough mixes. and there are some gluten free beers like Redbridge made by Budweiser.

      I was diagnosed with a gluten sensitivity in March. It was discovered that my levels of the antibody were 4-5 times above the normal level of a non-sensitive person. Since then I’ve been seeking out gluten free products in my local grocery stores and was surprised to find how much is there. There are some stores, like Whole Foods that have a large selection of gluten-free products like flours, pastas, breads and crackers. The big shock was how much I was able to find in a more “mainstream” store like Jewel/Osco (similar to a Albertsons/Savon). Plus, all unprocessed fruits, vegetables and meat are naturally gluten free. Friends of mine who never heard of gluten before I told them about my sensitivity to it, are now telling me that they are seeing signs for gluten free products and restaurants all over the area.

      More and more manufacturers are coming out with gluten free versions of your favorite products. Betty Crocker now makes gluten free yellow and chocolate cake mix as well as a gluten free brownie mix and gluten free Bisquick. For a Halloween party, I made some gluten free carrot cake cupcakes using the Betty Crocker yellow cake mix. No one eating them could tell them from cupcakes made with wheat flour. One person at the party who was diagnosed six years ago hadn’t had carrot cake since switching to a gluten free diet. His eyes rolled back in his head in ecstasy as he savored the cupcake.

      While it may be harder to find convenience foods that are gluten free (from restaurants as well as processed foods at the grocery store), there’s really no reason you can’t eat gluten free foods that as good as the gluten full versions you’ve always had.

    2. Emily,
      The numbers came from the Huffington Post article, which was interpreting some research (that I linked to above). LIkely to die from all causes, I believe, if I remember right. Earlier, I imagine. Weird, eh?

      My hunch on the inflammation causing death more than the celiac are that celiacs figure out they have a problem and eat better, but those with inflammation are probably eating so much wheat without realizing it’s hurting them. Just my hunch!

      Good questions- I would definitely recommend reading the Huff Post article, as it had some interesting insights.

      🙂 Katie

  47. I’ve read that there are low-gluten Communion wafers available for Catholics, but not gluten-free ones. I wonder what percentage of the population is so sensitive to gluten that the amount in a Communion wafer would be a problem.

    1. Thankfully we can receive under two species and each is Christ’s whole body, blood, soul and divinity. 🙂

      I have a friend who has two daughers with Celiac and when it comes time for her younger one to make her first communion, she will be skipping the host and going straight for the wine.

      1. Michele @ Frugal Granola

        Our church has people who make the communion wafers for our church, and a sweet lady makes specifically gluten-free ones for those who need it. 🙂 Now we don’t have to skip communion!


    2. Lora,
      I think there are GF wafers, but you usually need to bring your own to church and place it on the altar for consecration. Or just receive the Blood of Christ. I bet it’s becoming more and more common that churches need to accommodate allergies and food issues.
      🙂 Katie

      1. I was wondering about this… I’ve cut out gluten (and dairy and sugar) after finding out I might have Graves. I received last night at mass but had a raging headache afterwards. Not sure what caused it though, so I’ve been trying to figure out if/how sensitive I am and how to handle that until I know. Is there a conclusive way to get diagnosed or are most tests kind of pointless?

        1. Anne,
          Some other commenters talked about a stool test at a certain lab…might be worth a try! Such a tricky road to be traveling – prayers for you! 🙂 Katie

    3. Do the Ethiopian-rite churches (Catholic and/or Orthodox) allow the use of teff instead of wheat in the communion bread? Teff is gluten-free and a staple food of Ethiopians. I seem to recall that “true” wheat wasn’t always present in Ethiopia, and that for some period of time, teff was referred to as wheat. Not sure what the canon law officially is.

      I think it’s a little bit hypocritical of the Vatican to officially classify capybaras as fish (for Lenten purposes), but not to be willing to reclassify teff as wheat suitable for communion. Not sure what the Orthodox church’s stance on the matter is, although the Orthodox website I found said that the host should be made of pure wheat. But do they mean wheat-wheat, or teff-“wheat”, or both?

  48. Great post! We have been gluten free for two years. My son has Celiac and my daughter and I have severe intolerances. I found when I would cheat and eat gluten two things happened. First, I would not be able to stop eating. If it was pizza, I would want to eat the whole pizza. It is addicting to me and I can’t stop. Secondly, I would have so many side effects it was not worth it.
    I personally think it is not good for anyone. It effects your endocrine system so much and all of the things you mentioned too.

    Lastly, I have noticed in my Gluten free lifestyle is that people are tolerate of you being that way but don’t try to tell them they should not eat it. Even when you know their health issues are caused by gluten. They do not want to know and do not want to change. It seems too hard and ignorance is bliss.

    Good luck with your quest in getting your husband healthy! You will feel better too!

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