This article was first featured at The Huffington Post. Click here to see the original article.
Celiac disease (CD) was initially described in the first century A.D. by a Greek physician named Aretaeus of Cappadocia. (1) But neither Aretaeus nor anyone else knew that CD is caused by an autoimmune reaction to gluten, a protein in wheat. That didn’t become clear until 1950 — several centuries later — when Dr. Willem Dicke, a Dutch pediatrician, conclusively proved that gluten was the culprit. (2) Dicke’s discovery saved millions of children and adults from the perils of untreated celiac disease, including malnutrition, stunted growth, cancer, severe neurological and psychiatric illness and even death.
Since then, the mainstream view of gluten intolerance has been relatively black or white: Either you have celiac disease, in which case even a small amount of gluten will send you running to the bathroom in three seconds flat, or you don’t, and you can chug down beer and bagels without fear. This “all-or-nothing” view has led to some doctors telling patients that suspect they’re sensitive to gluten but test negative for CD that they’re simply imagining an affliction that doesn’t exist.
It turns out those doctors are wrong.
The Many Shades of Gluten Intolerance
In order to explain why, I have to give you a quick lesson in the biochemistry of wheat and wheat digestion.
Wheat contains several different classes of proteins. Gliadins and glutenins are the two main components of the gluten fraction of the wheat seed. (They’re essential for giving bread the ability to rise properly during baking.) Within the gliadin class, there are four different epitopes (i.e. types): alpha-, beta-, gamma- and omega-gliadin. Wheat also contains agglutinins (proteins that bind to sugar) and prodynorphins (proteins involved with cellular communication). Once wheat is consumed, enzymes in the digestive tract called tissue transglutaminases (tTG) help to break down the wheat compound. In this process, additional proteins are formed, including deamidated gliadin and gliadorphins (aka gluteomorphins).
Here’s the crucial thing to understand: Celiac disease is characterized by an immune response to a specific epitope of gliadin (alpha-gliadin) and a specific type of transglutaminase (tTG-2). But we now know that people can (and do) react to several other components of wheat and gluten — including other epitopes of gliadin (beta, gamma, omega), glutenin, WGA and deamidated gliadin — as well as other types of transglutaminase, including type 3 (primarily found in the skin) and type 6 (primarily found in the brain). (3, 4, 5, 6, 7, 8)
This is a huge problem because conventional lab testing for CD and of gluten intolerance only screens for antibodies to alpha-gliadin and transglutaminase-2. If you’re reacting to any other fractions of the wheat protein (e.g., beta-gliadin, gamma-gliadin or omega-gliadin), or any other types of transglutaminase (e.g., type 3 or type 6), you’ll test negative for CD and gluten intolerance no matter how severely you’re reacting to wheat.
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Beyond Celiac: Why CD Is Just the Tip of the Iceberg
Official statistics suggest that Celiac disease affects between 0.7 percent and 1 percent of the U.S. population. (9) But considering the limited scope of the testing, it’s possible that the actual incidence might be much higher.
In addition, CD is only the tip of the iceberg when it comes to gluten intolerance. Celiac disease is caused by a distinct autoimmune response to wheat proteins and transglutaminase enzymes in the gut. But CD is just one possible expression of gluten intolerance; there are many other ways that sensitivity to gluten can manifest in the body. These are collectively referred to as “Non-Celiac Gluten Sensitivity,” or NCGS.
There’s no consensus definition of NCGS yet, but the most common understanding is that it’s a reaction to gluten that is not autoimmune (like CD) or allergic (like wheat allergy). Another definition I’ve seen is, “a reaction to gluten that resolves when gluten is removed from the diet and CD and allergy have been ruled out.” (10)
It’s difficult to estimate the prevalence of NCGS because there is no definitive diagnostic test for it. As I mentioned above, the currently available tests for gluten sensitivity are primitive and only screen for a small fraction of the components of wheat that people react to. Another issue is the variety of symptoms caused by CD and NCGS. While most people assume that gluten intolerance always causes digestive distress, this is not the case. Almost 50 percent of new patients diagnosed with CD do not have gastrointestinal symptoms. (11) Moreover, for every one case of CD that is diagnosed, there are 6.4 cases that remain undiagnosed — the majority of which are atypical or silent forms without gastrointestinal symptoms. (12)
Gluten intolerance can affect nearly every tissue in the body, including the brain, skin, endocrine system, stomach, liver, blood vessels, smooth muscles and even the nucleus of cells. CD and NCGS are associated with an astonishing variety of diseases, from schizophrenia and epilepsy, to Type 1 diabetes and osteoporosis, to dermatitis and psoriasis, to Hashimoto’s hypothyroidism to peripheral neuropathy. (13) Because the range of symptoms associated with gluten intolerance is so broad and nonspecific (e.g., can be attributed to any number of conditions), many patients and doctors don’t suspect gluten may be the cause.
Even with these limitations, some estimates suggest NCGS may occur in as many as 1 in 20 Americans. (14) And while some mainstream medical professionals continue to insist that NCGS doesn’t exist, several studies have validated it as a distinct clinical condition — including gold-standard, double-blind, placebo-controlled trials. (15)
The Gluten-Free Challenge: Still the Best Test for Gluten Intolerance
With all of this in mind, the obvious question that arises is, “What’s the best way to test for gluten intolerance?” Because of the limitations of current laboratory testing I described above, most experts on gluten sensitivity agree that the only reliable test is a “gluten challenge.” This involves removing gluten from the diet completely for a period of at least 30 days, and then adding it back in after that. If symptoms improve during the elimination period, and return when gluten is reintroduced, a diagnosis of NCGS can be made.
However, for many people a gluten-free diet isn’t enough. Some grains that don’t contain gluten, such as corn, oats and rice, contain proteins that are similar enough in structure to gluten to elicit an immune response in people with CD or NCGS. In addition, about 50 percent of patients with CD show signs of intolerance to casein, the protein in milk. (16) This may explain why up to 30 percent of CD patients continue to have symptoms or clinical signs after adopting a gluten-free diet. (17) For this reason, I recommend a completely grain- and dairy-free diet during the gluten challenge period.
Finally, though the gluten challenge is still the gold standard test for gluten intolerance, there is a relatively new lab (Cyrex Laboratories) offering a comprehensive blood test which screens for all of the wheat and gluten proteins and transglutaminase enzymes I mentioned above. This can be a helpful diagnostic tool, but it should never replace a gluten/Paleo challenge. (Note: It must be ordered by a physician or health care practitioner.)
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I was diagnosed with Celiac a little more than 2 years ago and welcomed the changes in my diet just to feel better. Unfortunately, it only lasted about 6 months and then may body started shifting. I continue to gain weight especially around the middle/waistline, and now all foods seem to bother me or cause reaction. I cut out coffee, tea, dairy and all wheat, barley and rye and still I bloat, get gas and have pain after I eat just about anything. Eating isn’t fun anymore now it’s a chore. I feel like I look 9 months pregnant weather I eat a cup of brown rice or have a potatoe. Having another endoscopy tomorrow to see what else could possibly be going on. Any insight would be great. Help!
Lisa,
Are you still eating any grains including corn any corn derived ingredients?
Hi Lisa,
Did you have a positive Celiac test? Would you mind sharing an update with your progress. I am in the same situation. Feel I might be reacting to any form of sugar now.
Thank you
To Danielle,
Most like the doctors will not have any idea what is wrong with you.
I cannot tell you how many I’ve gone to. I actually canceled my insurance because I felt why pay people who are doing nothing for me. I continued to go for a while paying “top” doctors cash, in my area only to find the same thing.
My story in short, lol is above. Hope you can make it through all the miss spelled words I later noticed.
I don’t know how I connected mine symptoms to Gluten but in my research I think Dr Peter Osborne may have the best explanation of what is going on. He says all grains have proteins simular to Gluten that the body of a Gluten sensitive person can respond to. I thought for the past 20 I was lactose intolerant. When I got my food sensitivety test results back Casein in dairy was at the top of being the worst reaction, along with dairy, eggs, soy and pecans. I even cannot have things that were low reactions like Wheat, Gluten, honey and anything derived of corn. Including my vitamins. Just about all vitamin C in supplements is derived from corn.
The only way I feel symptom free is eating only whole foods, grass fed beef, organic chicken, fruits and veggies. The longest I have made it has been four weeks. It is not easy.
You are lucky in that your reaction is felt right a way. Mine is felt most four days after. Everything gets better if I eat clean for another 2/3 weeks. Than I start to feel amazing enough to shortly after blow it all over again.
PS. I would highly recommend Peter Osborne. He does phone consultations if you are out of area. This was what I did in Dec. I was already up on what he was going to tell me from my own research. However just taking his IGg and Gluten Shield, along with his vitamins I have been able to get rid of a pain in my left side/colon area, if I keep a clean diet. He is booked out a few months.
I removed gluten from my diet in February after an elimination diet showed I was gluten sensitive. My symptoms after eating gluten are gastrointestinal pain, bloating, and headaches.
So I told myself this was a gluten sensitivity and have tried to remove it from my diet, but now I’m having more problems. In the past three weeks I’ve eaten white rice two times. The first time a piece got stuck in my throat, I immediately began coughing and snorting to try and remove it but I could feel that it was stuck, the next morning I woke up with a severe sinus infection. After three days the piece of rice came out of my mouth, but the sinus infection symptoms lasted for 11 more days–thats how sick I was. About a week after I was better I had white rice again. Nothing was stuck this time, but immediately upon finishing the meal I started coughing uncontrollably, my throat felt scratched. I woke up with another sinus infection.
I drank cow’s milk last night, probably more I usually would. I had some after dinner and woke up in the night coughing (still getting past that 2nd sinus infection) and in a rush in the middle of the night I drank more milk. This morning when I woke up I was nauseous and had stomach pain which turned into diarrhea. Which is unusual for me. Almost as if I’m lactose intolerant??
Until reading your article I was thinking that something was seriously wrong with me. But now I’m wondering if this is all linked to gluten allergy.
I haven’t been tested for CD. But maybe even if I was I could have NCGS? And I’m worried if I go to a traditional doctor they won’t have the tools to really help me. What if they’ve never heard of NCGS?
Any thoughts?
Yep, I get the white tounge thing too. Assuming it’s to do with candida. Tried treating it but it comes back if my body decides I’m taking on too many sugars or I get stressed sadly.
Tried again to talk to my Dr about all this but she told me that the blood test she did was conclusive and that even tho I was on a gluten free diet when she did it that it makes no difference. She dismissed my swollen joints when I ate cake recently as being unrelated. I am also suffering with similar reactions to medications (inc herbal), any green leaf veg/salad and a host of others but these ones stand out right now. A gluten free, pain killer free, green leaf free diet has helped and I am better than I was but I am still trying to find the cause for the continued symptoms. Think I might be alergic to my heart tablets ….but how do I stop taking those?!!? My Dr is VERY unsympathetic and because I’ve been ill all my life, despite a diagnosis of FMS, ME and CF from a specialist consultant, I seem to have got labelled as a hypochondriac. I breaks my heart to see my husband watching me and getting sick himself with worry while Drs tell me it’s all in my mind. It’s been so much worst since I’ve been menopausal. I’ve tried HRT, but due to all the negativity towards this treatment it seems most GPs know very little about it and are most reluctant to prescribe it. My Drs have messed me about with it SOOO much I am now starting to react badly to this medication as well. It’s almost as if my body is learning what’s hurting it and rejecting everything that looks even vaguely like it! Shame tho because when I went on the HRT in the beginning I felt so much better and I was almost able to come off my heart medication (AFand PVCs) Soap Box moment here …if heart disease is the biggest killer of women and the chance of getting it goes up considerably with menopause (and I’m already showing signs of it) why are Drs giving me grief about a 4% increase in the chance of getting womb cancer when taking HRT?
You need to see a functional medicine specialist. If you live in Los Angeles, I highly recommend Dr. Sam Rahbar. If you live elsewhere, google functional medicine and see who you can find that has good reviews. They are trained to take these systemic complaints seriously and not treat you like you are crazy. He has helped me so much and I feel 10 years younger.
Hi BB, interesting to hear you get white tongue too. I wonder if it is prevalent in people who have gluten intolerance, or if it is a minority symptom.
Do you know if you also get white tongue from a strong fever like cold/flu?
My ‘white tongue’ is not extreme, more like gray tongue, a sort of greyish off-white tongue. Very noticieably different if you know my normal pinkish tongue. When I get it, I do have it during the day too, but one of the best times to assess it is in the mornings because there is no interference from recent eating.
David,
Mine is just as you describe, white/gray. Saliva feels thick. I actually went to see if I had mouth/throat cancer when this first happened becauuse when it started it itched/burned.
Don’t notice that much anymore.
The only improvement I’ve had since this began is I don’t get sick anymore. So I would know about it while being sick.
Last Thursday I went out my gluten free diet. Always around the fouth day my symptoms peak. Today is the fourth day. Another thing I noiticed after eating enough Gluten, is that I feel like I never ate. Always hungry until being back on the diet for about three weeks.
For those that say NCGS is different than Celiac. Not true, my test was negative and this effects EVERY area of my body, the worst being my digestion. Feels like electric shocks from left through the right. Than my kidneys begin to hurt and so on. My doctor refused to do a second test.
To David from Ireland
I also have the white tongue since all my symptoms began. I read on the internet it was from yeast over growth. Yes, the stool test and lab test came back negative.
I have only lasted as long as four weeks so far, on a true gluten free diet.
But thank you for posting this.
Chris, thanks for your article. It’s good to put this information out there.
You seem to be the kind of doctor I call a ‘medical scientist’ — you don’t play the act that medicine knows everything and are aware of the limitations of the field and the advances of the science.
One possible criticism of something you said in your article if I may. You say “There’s no consensus definition of NCGS yet, but the most common understanding is that it’s a reaction to gluten that is not autoimmune (like CD) or allergic (like wheat allergy).”
Is this true? Whether it’s your own understanding or the medical profession’s understanding, I see no evidence of any kind leading to a sensible assumption that NCGS is not autoimmune. But perhaps there is and you could lead me to it?
The most sensible definition I know of of NCGS right now is to define it as broadly as the information and evidence allows with no added assumptions, an Occam’s razor approach. One definition might be “a condition leading to some subset of (specified) symptoms if gluten is consumed, that is not celiac” (ie does not produce gluten enteropathy). Because it is just by definition non-celiac, is not a good reason to assume that it is not autoimmune.
I have pretty bad NCGS and I strongly suspect it’s autoimmune. In fact, it is possible that NCGS is scientifically the ‘same disease’ as celiac disease, in every sensible definition of ‘same disease’, but just not having the symptom of enteropathy; as diseases often do not produce the very same symptoms in everyone. There are experts who theorize this. It is possible that the disease will be ultimately be called ‘gluten autoimmunity’. It is possible that the particular part(s) of the body which are attacked by the immune system in gluten autoimmunity vary–for some it is the gut — celiac disease by current definition — for others perhaps the nervous system, leading to depression for some, and perhaps it is the joints and muscles for others. And of course it could attack more than one part of the body for anyone. Then there is gluten ataxia, which may be a gluten-mediated immune attack on specific parts of the brain, which may be just another manifestation of gluten autoimmunity.
On my gluten free diet, when I get accidentally glutened, I have nightmares and disturbed sleep for a few days and feel depressed as hell for up to a week, depending on how bad the glutening was. This is exactly what some ceiiacs feel. However, I was tested for the enteropathy and it came out negative, so I am not celiac as it is defined. I wish my doctor had told me (maybe it wasn’t medical knowledge at the time) that I might still benefit from a gluten-free diet even though I am not celiac. That could have saved me years of my life.
I have another good reasons for thinking this is autoimmune. Before I went gluten free, I ALWAYS woke up with a very white tongue. I thought it was just ‘me’. On a gluten free diet, my white tongue cleared up after several weeks, except it now happens as a symptom of being glutened and lasts for a few days, while I am sick from the gluten. However, when I get any cold/flu I also get a very white tongue, suggesting that white tongue is something I get when my immune system is highly active. (Before I went gluten free I never noticed this connection for me between white tongue and cold/flu/infection/fever.)
It is possible that there is a NCGS that is not autoimmune. This can even exist in addition to an autoimmune NCGS. In any case I see no good reason to be assuming that NCGS is not autoimmune.
Thanks,
-David
I agree that I think they will someday figure out that NCGS is really Celiac in another form, just as they figured out that Dermatitis Herpetiformis is really Celiac disease affecting the skin. There are so many different body systems and the gluten reactions definitely seem autoimmune or to trigger autoimmune (I ended up with Graves Disease and chronic hives before finally going gluten free.)
I also am really starting to believe that it may also be related to GMO wheat, since some people are able to eat semolina flour or spelt (an ancient wheat relative) but not bread flour (most likely to be GMO’d.)
I am curious as to Chris’s take on the genetically modified theory.
I’ve been struggling with this issue as well. And seeing SO many people in the same situation makes me wondering if it is our food supply!
Anyway I am 43, female and have a long history of why’s.
Terrible cystic acne as a teen, abnormal hair loss, bronchitis, pains in my left side, red bumps on ears and scalp. Diagnosed with low iron, never improved with supplements, heavy periods.
20/30’s reoccurring breathing and back problems, hormonal problems, moody,
Late 30’s I began having terrible none stop ear infections. The doctors gave me oral and topical antibiotics for three years. Never help a bit, infections returned. The pain was also in my jaw, I began to have TMJ and teeth began to shift.
I got braces for the first time at 40. Hands/feet broke out in blisters, dry peeling skin, extreme hair loss every six months for six months, back problems, fluttering near the colon area, gums thinning, terrible heart palpations, slurring words, brain fog, would forget where I was going, dizzy, eczema, constipation, itchy ears, no skin left in them from peeling, my stomach fluttering spread from the left through the right. I could go on and on with symptoms. I seriously thought I had to be dying. While doctors were calling me a Hypochondriac and telling me to buy a book about a man that in the end learned he WAS dying and didn’t have to worry anymore, unexceptable!
I was tests for Celiac about three years ago (negative) before the stomach pain spread. Doctor will not retest. In the mean time through trial and error I have learned that I cannot eat anything but meat, vegetables and fruit. This was very hard for me because I was never a cook. Every time I fail, the symptoms return about four days after and I have to go back to the diet.
My father bled from his colon his entire life. I can remember him telling my mother all the symptoms he was experiencing. At the same time this exploded with me, he was in the hospital diagnosed with Ulcerative Colitis, had his colon removed and died because he was not gaining weight.
Looking back, I now wonder if my father was actually a Celiac. I look at my family members and they all have something from Asthma, colic, ear infections, Hypothyroid.
My symptoms are bad enough that I would about the reliability of celiac tests! I actually believe I would be on my death bed had I not caught on to the food connection.
I have Hoshimotos Thyroiditis. My immune system attacks my thyroid gland. My immune system flairs up when I eat gluten, or certain grains that have similar proteins to gluten, like corn, various nuts, coffee, gluten free chocolate(!), sorghum, tapioca, most foods on the gluten cross reactive food list. They make gluten free cookies with tapioca that can make one as sick as eating wheat!
I was very fatigue 2 .5 years ago and I knew I had a thyroid issue. I did enough research and found a doctor who treats patients with a special diet and does some proper testing through Cyrex labs. I did not want to take pills, treat the symptoms and ignore the cause of my problems. I was loosing hair, I had muscle aches, I couldn’t sleep, I was drenching in sweat while asleep …many many bad symptoms. The worst was the lack of energy. I had to eliminate all the grains, dairy, night shade vegetables(may cause inflammation!), replace coffee and green tea with the black tea(surprisingly proteins in green tea and coffee are similar to gluten and can affect a thyroid gland and an immune system in a negative way, just like gluten). Nine months after my super strict diet my sleep was perfect, my hair started to grow and became shiny and my energy came back. For the last two years I’ve been feeling like a newborn! BTW I haven’t been eating gluten for 17 years since I came to the US, but I was occasionally cheating on gluten and taking anti histamine pills to calm the reaction(I was getting itchy and was getting a lot of pimples), still I got myself to the point where I managed to get Hoshimoto’s even avoiding gluten for such a long time.
Gluten is no joke. Although I was eating healthy prior to my treatment/strict diet, tests revealed I had high acidosis, vitamin D level was extremely low and I was vitamin B12 deficient, low on magnesium,had high inflammation, and was reactive on hypo-glycemia…All the tests came out normal after nine months of a strict diet. I can never get rid of Hoshimoto’s or reactive hypoglycemia, but I can keep it under my control.
My mom has rheumatoid arthritis(autoimmune disease) and she did some celiac testing in UCLA. They found nothing and concluded that she had no gluten allergies.I took my mom to the same doctor who treated me and whola! She had Hoshimotos Thyroiditis, inflammation of the brain and myriad of other issues. She got on the same strict diet and then got tested at UCLA 6 months later. Her inflammation tests revealed the lowest inflammation in ten years!They did not know why. I told them she was on a special diet, but her doc dismissed it as a quackery.
I hope I didn’t take too much space and I hope this info will help someone to change their life through some dietary choices and a complete elimination of gluten! Cheers!:)
Hi Chris.
I suffer with fibromyalgia
I went gluten free for about 5 weeks and felt a little better. I added wheat back in (homemade biscuits with butter and honey) The next day I did not have digestive issues but had ++ body pain and stiffness so that was pretty clear. Is NCGS associated with FM?
Linda in British Columbia
Linda – that is the same reaction I have. No digestive issues but muscle pain and stiffness all over. Oddly enough, semolina flour does not cause the same reaction so I can eat pasta and bread made with semolina and somewhat more limited – spelt – without problems. I had thought I was developing something like fibromyalgia but when I first quit gluten, I was pain-free after five days. But it’s only some kinds of gluten. The worst is the modern short stalk hybridized wheat used mostly for mass manufacture bread and bread flour.
Oh…the agony of the feet (and sometimes the hands too!). For years I’ve battled foot skin that flakes, peels, splits all the way down to the meat and then bleeds, blisters, and itching. Doctors have no clue and just recommend athletes foot treatments which after years of use have never made a difference. After the latest blow-up left my feet swollen, covered with grey flaking skin and blisters, and unable to walk, I did some internet research. The next day I went gluten free. It’s been over 3 weeks now. I still have flair ups, but from what I’ve read it can take months for all the gluten to leave your system. My feet look and feel so much better. In addition to my feet feeling better, I have more energy, and for the first time in my life I’ve lost a little weight. It’s not much, only 5 pounds in the last month, but I’ve been battling my weight since I was 12 and have lever before lost a single pound!
Curious what it is I am actually having allergic reactions. Please comment if you have an idea..I have been gluten free before but am not currently. My allergic reactions started about 6 months ago..they don’t happen every time I consume pasta or bread or beer. And it even happened once when I ate rice noodles..so that doesn’t make sense. But it’s only at night when I am sleeping that this happens. I wake usually out of a dead sleep with red skin, itching like crazy, feels like I have needles in my blood. I have to take a benadryl or else I suffer. Any ideas? I’m at a loss.
When I eat gluten I get canker sores. When I eat brown rice my mouth swells and becomes inflamed. And quinoa is the worst! I feel like I’m going to have an asthmatic attack. But I have never tested intolerant to gluten or grains in general. I just avoid them and feel better and I appreciate your paleo guidelines.
I have been gluten free for a little over 2 years. I have seen no improvement in my symptoms over this period of time. I just recently went to see a GI specialist who has recommended that I try to slowly reintroduce gluten back into my diet to see if it’s tolerated. No where can I find any information on how to slowly reintroduce gluten. Any suggestions? How much at a time? How often? Thanks!
To MIchelle Myler:
not sure I can help, but you said that you felt better on gluten free for about a year, then symptoms started to return. That’s consistent with contamination — are you eating out at all, or are you eating foods you aren’t sure of?
I’ve come to the reluctant conclusion that it isn’t possible to eat out at all, as a gluten-sensitive person with serious health issues. There may be some exceptions, but most restaurants simply don’t have the diligence to prepare contamination-free gluten-free food.
Chris, great article. Articles like this make people, like me, feel a little less anxious about being reactive to grains, in general (and dairy). It can be is sad, lonely, depressing and painful, to live day-to-day just trying to eat “normal” and feel “normal”. There almost seems like no such thing to me on most days unless I am eating raw veggie/fruit smoothies and lean meats/fish. I am exhausted for trying to find the answers, spending money on supplements, and getting testing. Sometimes I think there might be an underlying terminal disease eating away at me, making sense of this non sense. I have had a life FULL of of food intolerances AND allergies started at birth, (21 allergies at 8 months and allergy shots at 8 months then again in college, bad seasonal allergies my whole life) and yes I have been tested on both levels (most recently food intolerances).
My mom has celiac (all grains I could not tolerate from infancy). She was only diagnosed a few years back when I recognized that she was a poster child for the disease. Since I have not eaten Gluten in many years the traditional testes would not be valid for me. My naturopathic doctor did the gliadin sensitivity tests, and some other autoimmiune tests related to that, as well at the DNA marker test for celiac (negative). I was SO SURE i was celiac I would have bet money on it.
My story is a LONG story but after I cut gluten out as an adult I had some cleansing reactions then recovered and felt amazing for about a year, then symptoms starting creeping back, a little different but GI (I do not and never did get diarreah, but if I ate a pizza now I am sure I would). I got traditional allergy testing and learned I was moderately (3+) allergic to corn, buckwheat, and avocado (I knew about avocado because when I eat it I am doubled over, and suspected corn too). Also results showed that I am mildy “allergic” (1+) to soy and egg (which I didn’t know until my naturopath read the results and said “oh, you can’t have egg, soy”. She believes even, mild reactions are worth avoiding while my allergist said I am not allergic whatsoever to those. SOOOO I cut out my mildy allergic items, felt relief, yay but then symptoms started creeping back AGAIN. By symptoms I mean my stomach seems to get inflamed, pushing into my diaphragm, causing fatigue, foggy headed, overwhelmed, sometimes it feels like bloating, mild sinus headache, anxious, bags and circles under my eyes, and constipation if I am not careful to eat lots of flax and drink lots of water (amazingly I can tolerate, go figure)?!
Anyway, I then got food sensitivity panel done, and learned that I am intolerant to white potatoes, turmeric, green pepper, and some other random things. I can not tolerate coffee, or red wine like i used to start and begin my day with (black coffee in a.m. , a glass of red at night). So I feel l slowly I am dwindling with what I can tolerate. I am getting too skinny because I am so limited. I cook and eat, I do! I have green tea instead of coffee, which is better for me anyway, but I feel best when I am completely grain free, ughhh, with the exception of quinoa. I can not tolerate oats, and I am pretty sure I can not tolerate rice. My mom’s doctor gave her a sheet of all of info. about the other grains etc. that people start not being able to tolerate after they start eliminating gluten. Can anyone shed light on this. I feel like I am the POSTER CHILD FOR THAT!!! whatever it is.
I do not usually post, or post this much if I do. I am hoping someone can shed some light. ??? or share a similar experience. I have gone downhill (especially – now I am only 40, but feel 80. I take regular doses, of 5,000 iu Vitamin D3 and Evening Primrose oil (1,500 e.o day) which help me maintain a leveled hormonal balance (all of my adult life that has been a problem). Also take DGL Licorice, and L-Glutamine, and chinese herbs that are supposed to relax the stomach (my acupuncturists gave me). I have very low iron stores(take gentle iron) BUT not low Red Blood Cells (yes, you can be low iron without being anemic, and I will add they have ruled out not have thyroid problems and hashimtotos. I also have low bilirubin, and my WBC’s teeter above and below normal/low and have for many years, oh and very high
I have been tested for HPylori and parasites etc. Please help me! I just did a three day juice cleanse and was great until I ate GF oats! Ok so now I know….
I am aware of leaky gut and candida. I am sure i had candida and maybe still to some degree because of the “heximer” (??) reaction I had when I stopped eating gluten. I think a ton of yeast & mucuous came out of my body *sorry for TMI)
Thanks for anything you can do to help my next steps in healing.
I’m a mess 🙁
Hello, Chris.
First of all, it is nice to meet/talk to you.
Secondly, congratulations for the website, for your book (that I bought – but I am still waiting it to arrive by mail), and for the kind of amazing professional and human being you are).
That said…
Well, my name is Leonardo, I’m 37 years old, and I live in São Paulo, Brazil (I am Brazilian).
I am very active man, I workout at least 5 times per week (40 minutes of weight lifting + 25 minutes of aerobic) since I was 16.
I have always been on a high carb and protein (and extremely low fat) diet. Moreover, I have been using Creatine, Glutamine and Whey Protein a lot and for years and years.
I love bread (of any kind, especially whole wheat), pasta, pizza, rices (brown, black, red, savage) and diet soda.
I was very ripped, strong and fit guy – like a “pro” (athlete).
However, around my 34 years old, something all of sudden change in my body. And I started to get slowly RESTLESS LEGS SYNDROME and fat (body fat).
I’ve been trying everything to become again very fit and, most important, to get rid of my Restless Legs Syndrome.
And honestly Chris, I was so so so afraid of eating (or just adding some) fat in my diet – because of more than 20 years not eating it -, that the idea was giving me nightmares.
Then, one day the magic happens, I found you!
I read everything about your book, I watched all your videos on Youtube, and 20 days ago I decided to change my diet (exactly like you said – with some little advices from the Grain Brain book too).
Even though I felt very weak, dizzy etc. in the first 12 days, now I am feeling great.
And, not only that, I’ve lost more than 7 pounds (fat and – of course – water and muscle too) and my Restless Legs Syndrome is much better (not cured yet – but, for sure, I want to get it cured).
So now I am pretty confident that eating gluten, rices, cheeses and not eating fat at all etc… all that were killing me slowly. More than good, I was doing bad to my body and mind/brain.
Now, from carbs I just have one red apple or one banana, and 2 pieces of mandioca (manioc) per day – more veggies.
By the way, Chris, can I still have Creatine and Glutamine?
Could I add more complex carbs (from manioc, for instance), so I can be more pumped?
I am telling all my family and friends about you and your book.
Thank you very much, Chris. God bless you and your family!
A big huge from Brazil.
Leonardo.
*Ps: You should come here to give us lectures.
*Ps2: I am your number one fan in Brazil.
Russ Crandall at The Domestic Man has some good breadstuff recipes using tapioca starch. And the Health Bent folks (of the cookbook Primal Cravings) have a tapioca starch biscuit recipe that answers all those howling needs for a PIECE OF BREAD, DANGIT! when you’re having soup. 🙂
For years I made sourdough using Nancy Silverton’s book Breads from LaBrea Bakery. You make your own starter, and it takes about 14 days, with you feeding it three times a day. But after it gets going good, you only have to feed it once a month. I used that starter for YEARS, but threw it out when I went paleo. It had LONG rises, and the bread was scrumptious. I still cannot believe it devours all the gluten, though. And with no celiac symptoms, only the disappearance of my Hashimoto’s antibodies, I am LEERY of eating wheat flour, even sourdough. So please report back if you try sourdough!
I suspect you slipped into a state of gut dysbiosis/SIBO. This happened to me after a stomach bug and stressful times. I highly recommend you drink 1-2 cups of milk kefir a day or do a 3 month course of Symprove. I’m in good shape now, also I only eat long ferment sourdough bread.
Thanks beaker!
I will give it a shot.
Anything to rid myself of this terrible gluten fee curse.
If all else fails I’ll try the long ferment sourdough bread.
Tried feeding some left over GF bread to the birds the other
day and even they wouldn’t eat it. 🙁
Re: Gluten free bread — for flavor, I like Udi’s products, though their bread often has big holes in it. The Whole Foods brand (think it is Gluten Free Bakehouse) is also good.
Thanks Lauren,
I’ll give both of those a try. 🙂
I was sick with intestinal cramps and headaches, bloating and gas, acid reflux, diarrhea and constipation, brain fog, depression and anxiety, thoughts of death and dying, ongoing fatigue, etc. Upon eliminating gluten after about 8 weeks all symptoms were gone. I have started eating oats and “may contain wheat” food with no problems after 6 months gluten free. Also I can’t tolerate any kind of milk, lactose free cow’s milk, almond milk, rice milk, coconut milk. But I can have gluten free pizza loaded with cheese no problem. Have not been tested for CD as no history in our family but afraid to do a gluten challenge in case I get real sick. I take a pro-biotic that contains lactose with no problem. Do you think digestive enzymes would help with tolerating gluten. It was at the age of 60 and 6 months after my mother died that I developed the gluten sensitivity.
I’m hoping it was an emotional reaction and now that the grieving process is over and I feel better I might be able to tolerate small amounts of gluten. It was a Dr. Oz show that talked me into going gluten free. That was the worst thing I could have done as now I can’t be tested for CD properly.
Anybody have a similar story?