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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 am what they call NCGS, dairy, corn, soy, oats, all grains, nightshades, all sugars(sucrose,lactose,glucose,dextrose, sucralose….) MSG, aspartame, eggs, meats fed sugar or GMOs, chicken that has been injected with milk or washed in chicken broth, soaps, spices(need to grow my own due to cross contamination all had to be removed from my diet. CD test resulted negative, need better testing….
Went tot he beach with a gluten intolerant child…had no gluten, felt better. Stayed off for 7 days. Came home, ate some bread, headache, fatigue, mental fog, bloating, intestinal pain. Have been gluten free for 7 months. Started going down hill about a month ago, ear pain, tired, no energy, then swollen lymph nodes with almost constant ear pain/pressure. Took one round of antibiotics, felt better. The day after I stopped, lymph nodes again swollen, sore throat and ear pain. Eliminated.dairy 3 days ago. Lymph nodes down (not quite back to normal yet, no ear pain, energy level is back..
Biggest problem for those with (previously) mild Gluten reactions is after you go glutenfree for a period when you inevitably get “glutened” (usually when eating food not prepared yourself) and the reaction to the gluten can be far stronger than any discomfort you had before so you are left with the following comparison:
– before glutenfree: regular GI discomfort but not long lasting or overly unpleasant and you get to eat cake / pancakes / bread etc. and can eat out in restaurants easily.
– after glutenfree: eat out rarely (reliance on resataurants tiring, is hassle and too risky), home prepared food is ok but tough to make it interesting without a lot of effort to build new skills and basically goodbye to lots of fun foods. But 95% of the time you feel good, have no GI issues and using the toilet, ahem, is a more pleasant experience. However after a long period of living the glutenfree life when you get glutened either by dodgy labelling, restaurant incompetence or inconsideration or falling foul of meals at parents / friends / family who just don’t get it then it’s a horrible experience (12-24 of GI unpleasantness that’s far worse than it used to be before).
So what do you pick? To be honest if I could go back in time to the point where I went glutenfree I’d stick with eating gluten and having the mild symptoms often and being able to eat out without interrogating the waiter and being able to eat bread and cakes (and ice cream without worrying about “stabilisers”) and also once you go glutenfree either there’s no way back (see being glutened above) or it’s an unpleasant journey back and maybe your life won’t return to the way it was.
Obviously my regret at choosing to go glutenfree is based on the context of my life, the value eating out and eating cakes and breads has to me and the mildness of my original symptoms and the extreme increase in the symptoms I now get after being glutenfree for a while when I get glutened.
Nick, are you aware that if you are gluten-sensitive and you are NOT gluten-free that you are quite likely, and if you have celiac disease certain, to be doing all sorts of scary and insidious damage to your body long-term? Does this enter into the equation for you in your regrets about choosing gluten-free?
I hear Nick loud and clear, and agree mostly, if I could go back. I was not celiac, but my Hashimoto’s antibodies disappeared when I stopped wheat. Nary a digestive symptom, but an autoimmune condition.
However, it is becoming clearer to me each day, and thus easier to bear the reality of it, that restaurants usually offer you the cheapest of meats and oils, and after a time of eating “clean,” these really don’t appeal. Higher-end restaurants use better products, and often de-emphasize the empty “fillers” of bread and pasta in favor of more creative and nutrient dense foods.
Still. Of course we all miss the yummy stuff. But there is a larger truth. The world would like to pretend that food is just food. When you discover that food can heal, and food can hurt, you know you’ve found out something important, but it feels like swimming upstream in our present culture.
I think what I’m trying to say is that I think I’ve made myself more intolerant to gluten by going glutenfree. Not sure it was a good idea.
Feels like far worse damage occurs when I get glutened now. And it affects my life far more, ok less frequently but takes me a couple of days to think about eating again and I can do no exercise in that period.
Impossible to know which scenario is more damaging.
I sometimes think this effect must be because your body is so damaged previously to being gluten free that things are numb, but then after they start to heal it is like a fresh wound. I do wish that they could develop a test for Celiac that would not require eating gluten, though. I went gluten free before my biopsy not knowing that this would affect tests, and cannot bring myself to try it again, but wish I knew if I had Celiac or intolerance. I try to be careful, but if I knew I had Celiac I’d be a little more scrupulous I guess. I do have the gene, though and have a great nephew who was diagnosed Celiac, so I’ve been gluten free for 20 months now.
Nick, I agree with Lauren Perreault here. It is true that the experiencing of ‘glutening’ is mor *acute* when you are gluten-free for a long time. But it is probably a huge mistake to believe that you are ‘better off’ taking gluten chronically.
There are other cases when a strong negative reaction is indicative of a more *healthy* body: cigarette smoking. If a non-smoker with a healthy lung smokes a pack of cigarrettes, they will cough, get sick and inflamed. This is not so much so with the regular smoker.
I take gluten-sensitivity so seriously that my goal behavior is *never* getting glutened. This means sacrifices–for example, I trust almost no restaurants and largely don’t eat out at all any more. But to me, not being glutened is worth it.
nick, where are you know? are you gluten-free or have you safely been able to eat it again? i had ZERO gut issues before i was implored by well-meaning friends to go gluten-free due to chronic fatigue syndrome. so i went gluten-free a year ago. i cheated the other day and had half a muffin. now, my CFS symptoms are so bad that my head feels like it’s going to explode and my fatigue is CRUSHING. i feel like i’m dying. the gluten-free diet didn’t make me feel any better whatsoever. and now, i’m scared i’ll never be able to eat a pancake again.
i’d love to know how you’re doing.
I should say that it does not look like Dermatitis Herpetiformas, as it is not circular bumps and blister. Instead my skin is red in long lines where the bun touched me.
I am gluten intolerant and have been basically off gluten for 3 years. My adrenal glands were going into shut down and I was sick all the time and had no energy. I felt no intestinal problems whatsoever. It took about 2 years off of gluten to regain my strength.
Yesterday a strange thing happened. I reached into a bag of frozen gluten free buns, that I had never tried before. Within 10 minute a red rash and welts appeared on my hands. It is painful and did not go away overnight. The buns were from Whole Foods and said they were made in a gluten free facility. I did not eat the bun. Ideas?
I have hashimoto’s and have tested positive for antibodies associated with every form of wheat and every form of dairy. I’ve also realized however that I feel much better when I cut out all grains. I’ve recently had a big flare up in Hypo symptoms prompting an increase in medication. This is primarily because I convinced myself that my body could handle any gluten free grain and whey protein. Within about a month of this, I was battling serious fatigue, insomnia, truly unbelievable fluctuations in water weight (10 pounds overnight), breakouts, mood swings, etc.
Two weeks free of dairy and grains and I’m feeling like a new person.
Suspect gluten or wheat intolerance,but, coffee also affects me. Normal or decaf, both have the same effect. Black with no milk, is the same. However, I have cut out coffee as well, but, I think milk or dairy is a problem. Milk,yoghurt are both suspected, but not cheese.
This is over quite a few years of ups and downs,so, not a shot in the dark.
Chris, I was diagnosed with Lupus in 1999 and had a flare involving my kidneys in 2007. After being treated for 3 years with standard medicine I chose to try alternative. In the past I was able to juice fast and get great results. I had some strong detox from I assume the medications I had taken, but I had severe rashes on my legs, arms, face, and back. I did a 14 day water fast and then ate vegan only to feel worse than ever. I felt so deficient. Shortly after the water fast I watched the Gluten Summit with Tom O’Bryan. My paternal grandmother had Celiac Disease. I don’t have most of the digestive symptoms, mostly skin rashes. I bought your book Your Personal Paleo Code and will start the 3 steps soon. I’ve already stopped gluten and am trying to get a simple diet plan that will be easy to follow. I will also be eliminating eggs and I already stopped most dairy other than Kefir, Grass Fed Butter and Feta. Since my water fast I have had burning and itching on my scalp. Any idea what is causing it or what may help? Thanks
Hi Chris,
I am a french journalist, and I am very interested in this topic. I am searching scientific studies related to gluten and Hashimoto desease. Would you mind giving me a reference.
Thank you.
I have been trying to find out for years and years what I have, leaky gut, celiac, lactose intolerance or maybe something different. I am bloated or constipated, with lots of gas alomost everyday, even without eating gluten. Sometime I have an impression that even after drinking a glass of water am filled with smelly gas and bloated to the point that I can seat, walk. I’ve been struggle with those symptoms for more than 5 years and visited numbers of doctors offices without any concrete information. I also have an issue with headaches, back pain, acne, hairloss, insomnia etc. As am health coach its really embarassing for me to have all those symptoms and teach people how to live healthy lifestyle. It’s just very hard to struggle with all those symptoms and feel like you stuck and there is no help out there. Am education myslef thru different sources. I listened gluten summit, bought bazillion books about immune diseases, gluten intolerance, did some online programs, started making my own fermented foods etc. Thing is am based in Prague, Czech Repbublic country of gluten, meat and dairy and no functional specilist here, no open minded doctor to support me in my struggle. So I am educating myself in order to find solution.
Enka, one thing you might start using, if you are not already, is homemade fermented foods; full complex Sauerkraut is so easy to make. I have a quarter cup at every meal and use it for a pick me up with my beer—any little excuse, eh?
Even on Ketogenic Paleo I had problems similar to yours, but within a few days using my living Sauerkraut (never boil or pasteurise—don’t use commercially made—nothing living there) the extremes were ended—I’d almost forgotten what being regular was like.
I go for a deep ferment where there is very little if any sweet left before I refrigerate it in litre bottles. My improvements were obvious within a few days. It then takes a little time for full constancy to be the norm.
Also the elimination of all carbs, for say a week, with higher amounts of natural animal fats (home rendered lard and beef tallow and suet, butter, coconut oil) might help as well. Then slowly you can begin to add in some friendly low cal carbs—some lower sugar fruit, occasional root vegetables. Nix all grains for a few months at least and totally banish glutens and corn/maze. Then you can experiment to see how your body responds with additions back into your new menu.
In a four litre pickle bottle I add to my cabbage, a julienne (thin) sliced beet, large chunks of a whole fresh pineapple, a TBS chia and flax seeds, berries, and fresh herbs to my kraut, anything that might feed different kinds of flora that will thrive in the bowels. A few TBS of whey, kombucha and kefir and other fermented cultures may liven up the party down below—you want your friendly bacteria to all be on good terms. I use a bit larger amounts of Celtic sea salt than the tepid moderns do today. I have no fear of quality salt.
Dr K has a recipe on this site with carrots and ginger that I am going to try as a sweeter, lighter fermented treat. I may branch into a beet and ginger concoction as well. I have become a Sauerkraut connoisseur, or nut—the High Priest of the Kraut. (Hadn’t thought of adding some crushed walnuts & Brazils to my mix—let your emanation run wild. 🙂
Namaste and care,
mhikl
My son started having extremely lower intestinal cramping in September. Happened once every two weeks. As the months went on, it got worse, occuring a few times a week at the end. We were seeing a pediatric Gastro-ent who believed it was constipation, despite my son moving his bowels daily. As the pains got worse, I insisted on a colonscopy/endoscopy. They saw several spots of inflammation exactly where y son is pointing to (middle of the intestine area, right above your pubic hair). Turns out they were lymph nodes. Nothing came out of the testing except Lactose intolerance. My husband and I are convince my son is not constipasted so took him off Gluten and Lactose. Symptoms improved but not gone. He gets the pains about every 2-3 weeks. Some times it is traceable to ignorance (didn’t know something had gluten) but other times we have no idea. No visible gluten eaten. Anyone have symptoms like this?
@Tracy, I could add:
Quoting Dr. Thomas O’Bryan:
“You do a test, it comes back negative but you know when you stop eating gluten you feel better. And the doctor says ‘It’s OK to eat gluten the test is negative’ NOTHING COULD BE MORE WRONG … You feel better when you’re not eating gluten THEN don’t eat gluten.”
That bears repeating:
“You feel better when you’re not eating gluten, THEN don’t eat gluten.”
This is the standard I propose applying to your child.
Do a right test, keep him TOTALLY off it for a period. Do proper research into what it truly gluten-free. No candies. No processed foods, etc. Ideally through this time, take precautions so he can’t ‘cheat’ on a play-date either, you know some kid giving him candy.
>> Recently saw a pediatric gastro and he said if he had celiac disease he would not react that quickly to it and to try an allergist.
** ABSOLUTE NONSENSE!! ** I am surprised to hear of a specialist saying such a thing, and I am wondering what his sources are for such an idea.
I myself react by bed-time usually when glutened during the day. There is lots of information and experience on this, and it is well known that celiacs/gluten intolerants can react very quickly to gluten, some faster than me. See:
http://www.celiac.com/gluten-free/topic/72422-how-soon-after-gluten-do-you-react/
>> Could my son be in the early stages of celiac disease or just be intolerant and
Yes, but I believe it is a mistake to consider gluten intolerance not to be serious.
>> how do I find out if it is wheat or gluten intolerance.
Unfortunately there is no known way right now, except the ‘better if you’re off gluten test’.
Oops, I double-posted that. I thought the earlier one was lost.
Thank you for the information. I didn’t mean anything by saying “just’ intolerant. i have been lead to believe that intolerance to gluten doesn’t cause damage to the body like celiac does. The poor little man has started a regular diet (since Sunday) and has had stomach pain since the start and diarrhea yesterday. Now he doesn’t want to eat anything because he says it will hurt his belly. Off to the allergist on Thursday and calls in to the gastro and his pediatrician. Definitely not going to make him do this much longer. Gastro had recommended 3 to 6 months before a blood test. NOT happening!!
Tracy,
the following is a VERY good podcast about gluten intolerance and celiac disease:
http://www.blogtalkradio.com/undergroundwellness/2010/07/08/gluten-sensitivity-and-celiac-disease-with-dr-thom
New to the gluten intolerance so can you clarify what you mean by no packaged foods or candy and truly gluten intolerant. I am trying to read labels and it if doesn’t say wheat, oats, etc. I am assuming it’s gluten free. Are there other words I should be looking for?
My 5 year old son has been dealing with constipation and diarrhea since September 2013. At first we were told it was because he had just started school and was nervous about having a bowel movement at school. We used laxatives to clear things up and he seemed better for a little while. Then again in March back to the doctor because of stomach pain (very often complaints) but still having daily bowel movements. He was tested for celiac as my oldest child has CD and his test was negative. I decided to put him on a gluten free diet. Two weeks after starting he came downstairs one morning with a big smile on his face and said, “Mommy my belly doesn’t hurt!’ At times he was accidentally glutened and would have stomach pain the following day and seem lethargic. Recently saw a pediatric gastro and he said if he had celiac disease he would not react that quickly to it and to try an allergist. Could my son be in the early stages of celiac disease or just be intolerant and how do I find out if it is wheat or gluten intolerance.
>> Recently saw a pediatric gastro and he said if he had celiac disease he would not react that quickly to it and to try an allergist.
** ABSOLUTE NONSENSE!! ** It is frightening to hear of an apparent specialist saying such a thing, and potentially dangerously misleading you.
I myself react by bed-time usually when glutened during the day. There is lots of information and experience on this, and it is well known that celiacs/gluten intolerants can react very quickly to gluten, some faster than me. See:
http://www.celiac.com/gluten-free/topic/72422-how-soon-after-gluten-do-you-react/
>> Could my son be in the early stages of celiac disease or just be intolerant and
Yes, but I believe it is a mistake to consider gluten intolerance not to be serious.
>> how do I find out if it is wheat or gluten intolerance.
Unfortunately there is no known way right now.
I too have most all symptoms of gluten allergies…but have tested negative with the standard testing.
I don’t drink processed milk or eat processed yogurts. BUT I can drink raw milk straight from the local dairies.
If I don’t watch what I eat and get into something with sugar & grains in it I ache like crazy.
Symptoms range from small watery blisters on hands, overall body aches & pains, constipation to what seems like total elimination over a period of a few hours, sharp shooting pains everywhere, headaches, sinus congestion etc…
So simple single ingredient foods is what I have to strive for. Meats, eggs, veggies, a few fruits like tomato’s, cheese’s (I can do these), avocado’s, olives, granny smith apples, lemons, limes, & black berries.
It is a struggle not to succumb to chocolate candy bars…etc but I know I feel better over all when I don’t follow my urges to stray.
Dawn,
Your story sounds identical to mine, down to the hand blisters! They were the first big thing I noticed back about 2005. Prior to that I was given repeat antibiotics for three years for ear infections. I than notice a fluttering feeling in the left side colon area right below the ribs. This feeling is now an entire sore feeling those reaching the right side near my hip bone. If I eat Gluten, I get achy and my stomach will feel like electric shocks, will end up effecting my back. When I eat anything wrng, I now get little bubble/pockets popping out from my intestines.
Since my test came back negative and it also involves any thing with sugar to lesser degree, it seems like Candida is more like what is causing this.
How are you gums and teeth. I am afraid I will have nothing left to eat soon because I am down to meat, and veggies. Just realized fruit is also causing symtoms.
Doctors are NO help. Getting pretty scared.
I was diagnosed as a Coeliac in 1977 when I was 11. I appear to be able to tolerate some gluten but of course I am not sure what is is doing to me inside. I was strict from the age of 11 to about late 20’s I suppose and I tried some gluten and there was no reaction. Since then and occasionally I have gluten – probably once every 2 months without reaction. I am not sure however if this is bad thing? If I was on holiday in Greece for example I really enjoy a Mythos beer and If I have one I am fine but should I? How often could I get away with having any gluten?
If you were diagnosed with Celiac you must NOT eat gluten. You might feel fine, right up until you are diagnosed with esophageal cancer or stomach cancer, etc. The damage that is done to your intestines when you have Celiac and consume gluten is sometimes hidden for many years. Please be more careful — you will be glad you did when you are older and are still healthy!
Is there any evidence of NCGS causing adrenal insufficiency or adrenal issues specifically?
When eating gluten or other cross reactive foods you are sensitive to, it causes stress to your body. Which can affect your adrenals. Even more so if you are experiencing other stressers at the same time.
Anyone experience muscle twitching? That was my main concern, along with severe bloating, before I quit eating gluten. Since eliminating gluten muscle twitches (all over body, all day, every day) have stopped almost completely. Saw improvement within the first week of GF diet. I still get small ones occasionally but maybe that’s due to another intolerance. Will start with dairy to find out. (Don’t want to pay for Cyrex tests yet.)
Hi Kristen,
I am listening to the cd’s of the book ” Grain Brain” by David Perlmutter, neurologist and nutritionist in one, the only one in the country.
He talks about muscle twitching and other bodily issues asociated with gluten sensitivities and diet high in carbohydrates. It is an amazing book full of incredible, clear, scientific info. Please check it out, it will answer most of your questions.
-Sonata-
Hi sonata,
Thank you, I actually have that book on hold at the library and need to go pick it up. Dr. Perlmutter is the one who convinced me to give up gluten. I was at my wits end thinking I had some horrible illness when I saw his program on the PBS fund-drive special a couple months ago. I made the gluten connection to my problem when I saw the video of that poor kid convulsing, and then his full recovery. (You can see it here at 1:02 and 1:15: http://www.doctoroz.com/episode/diane-keaton-her-eating-disorder-confession?video_id=3547191046001.) That convinced me that I had to try eliminating gluten.
I guess I was looking to see if others here have experienced twitching and whether they have also recovered.
I had peripheral neuropathy (tingling, numbness, a feeling like my heels had an animal breathing hot breath on them) until I gave up gluten, and then this all resolved. I am NOT diabetic.
As NCGS may have no apparent symptoms, what would a gluten challenge show? When I was 18 and getting interested in booze, one beer would provoke diarrhea. That went on for a few months, and then no such problem ever after. Was that a symptom of NCGS that resolved, or that has been masked somehow for 50 years? Or something else entirely, like alcohol toxicity? If there is no obvious symptom what is the challenge going to change? In other words, how can the gluten challenge be a good test for NCGS if there is no discernible effect?
John, what would a gluten challenge show in NCGS?Unfortunately, right now we can’t answer that—a gluten challenge will not diagnose NCGS. A gluten challenge followed by biopsy of the gut is currently the only definitive way to test for celiac.
Your experience with beer mirrors mine with bread — when I was younger I could notice something ‘in my head’, a change of consciousness, not pleasant, after eating bread. This disappeared eventually, but no, my gluten sensitivity did not go away. Gluten intolerance plus gluten was insidiously giving me depression eventually, but I had no idea gluten was involved. Gluten was giving me depression, but I noticed nothing mood-wise after ingesting it. However it was giving me depression, it was not ‘acute’ but ‘chronic’. Possibly, it is autoimmune, and my brain was being attacked by my nervous system under the influence of gluten.
One of the problems with gluten intolerance, which contrasts with an allergy, is that once you are in steady-state toxicity, eating gluten regulary, you may well notice *nothing* when you ingest gluten. In contrast with this, if you go gluten-free for a long time, then you may indeed notice symptoms after eating gluten.
This sounds odd, but it has parallels with cigarette-smoking: a nonsmoking person with a healthy lung will cough a lot if they smoke a cigarette. When they smoke regularly from the cigarette, they do not cough. Coughing is *one* of the reactions to the smoke, and this one goes when it is taken regularly. This does *not* mean that the cigarettes are doing no harm.
I have experienced depression also when on wheat. I didn’t notice before going off wheat. I noticed it when I went off and when I would get some wheat from cross contamination when eating at a restaurant. I noticed how tired it would make me, and I would feel depressed.
I went off wheat as a test because I was experiencing such gastrointestinal bad effects I needed to do something. I thought I was eating too much salad or fruit. Finally I tried going off wheat. I really thought I was dying because of my symptoms. So I was willing to try anything. I felt so much better that I just stayed on a wheat free diet.
I did eventually get tested for wheat allergy but returned negative and said I had a sensitivity to wheat. I was contemplating going back on wheat because it is expensive and because I had my gall bladder out and my husband thinks my problem with wheat stemmed from that. After reading this article I am reconsidering. I had forgotten about how one of the symptoms was depression. Don’t want to deal with that again.
Thank you for sharing!
My comment wasn’t posted so I decided to correct all the grammatical errors, hopefully it will be accepted this time.
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 suffered from extreme fatigue two and a half years ago and I just knew I had a thyroid issue. I did enough research and found a doctor who treats his patients with 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 losing hair, had muscle aches, 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 which may cause inflammation! I had to replace coffee and green tea with the black tea. That’s to do with the thyroid T1 and T2 levels.
Nine months after my super strict diet my sleep was perfect, my hair started to grow and was shiny, my energy came back. For the last two years I’ve been feeling like a newborn! As a rule I haven’t been eating gluten for 17 years since I came to US, but I admit to occasionally cheating on gluten. I was getting itchy and getting a lot of pimples, in turn taking anti histamine pills to calm the reaction. I still got myself to the point of contracting Hoshimoto’s even after avoiding gluten for such a long time. Gluten is no joke. Although I was eating healthy prior to my treatment of a very strict diet, tests revealed I had high acidosis, vitamin D levels extremely low, vitamin B 12 low, deficiency of vitamin d, low on magnesium, high inflammation, reactive 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 control.
My mother has rheumatoid arthritis which is an autoimmune disease. She did some testing for celiac disease in UCLA an the results came out negative. Then I took her to the same doctor who treated me and voila! It was discovered 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, so I told them she was on the special diet. Her doctor dismissed it as a quackery, but the proof was her otherwise unexplained improvement!! I have seen the proof, my mother and I are both testaments to the truth of diet having a profound affect on or health.
I hope I didn’t take too much space and I that this information will help someone to change their life through some dietary choices and a complete elimination of gluten! Cheers!:)
Sonata,
You symptoms sound like mine, story above.
I have suspected Thyriod most of my life, 43 now. Mother, sister both Hypothyriod.
So far I have low T3 but now TSH and so forth.
Can you eat fruit?
There are so many things involved in Hoshimoto’s , in most cases low thyroid patients have Hoshimoto’s but they don’t get proper testing to diagnose Hoshimoto’s, so they keep feeding pills . Most doctors treat the symptom, not a cause. My friend has a low thyroid and every year she had to increase her pill intake, because her symptoms were getting worse and worse. Finally she went to the right doctor and resolved all of her issues with dietary changes and immune system supporting supplements. She was finally diagnosed with Hoshimoto’s.
Yes. I eat fruit , but not as much as I used to. I try to keep my sugar levels balanced.
There are few things that need support in the body:
immune system, central nervous system, digestive tract, endocrine system. All of these parts need to be checked, addressed and supported.
Chris Kresser posting are great, very informative. Please read postings by Datis Kharrazian. He is very advanced in Hoshimoto’s treatments. I went to Dr.Gil Kajiki in Tarzana, CA. He has some youtube videos. Also there is a great website called http://www.stopthethyroidmadness.com/
(there is so much educational info on thyroid and the mistakes that doctors make when diagnosing their patients. )
This video is basic info, but a great one:
https://www.youtube.com/watch?v=axqRC7tp1yo
My diet was ZERO gluten, no night shade vegetables, no grains, no nuts, no coffee, or green tea, low glycemic index fruits, like everything that has a pit in it. Anti-inflammatory diet. It took me a few months to start feeling great, but it was all worth it. I used vitamin D supplements, Oxicell ointment, gut healing supplements, adrenal support supplements, vitamin B12….You need proper diagnostics to see what is really happening with your thyroid and immune system. Regular doctors run very basic tests that show nothing, or they miss on the markers that are very important. I hope it helps!:)
Hi Sonata
I was wondering if you could please please give me more info into Dr Gil Kajiki.
I am a hashi patient diagnosed since I was 13. I’m only 21 and my symptoms have deteriorated. Hair loss, muscle aches, brain fog, constipation the list can go on and it is not pleasing.
I had my free consultations with the Dr and I am deciding whether to commence his protocol. What is your advice? His patient reviews on youtube/his websites seem extremely promising! But $000’s just for advice and a diet plan?! Hmm
I look forward to a honest just reply 🙂
Yes, I can eat fruit, mostly the ones with the bone it. These types of fruits are on the low glycemic food list.
Have thinking surely this had to be Celiac/Gluten Intolerance, today I am questioning it once again.
Did you have any skin, gum, witish/grey tongue?
Even though I was still eating sweet potatoes and drinking coffee and having two pieces of fruit per day. I just felt there had to be more to it because I even recated to Peter Osbornes vitamin C that is truely Gluten fruit. It contained Palm sugar. I noticed when I would try to bake gluten free and used Coconut Negtar that I would react.
I am now wondering if what I have is really Candida. This is very frustrating because it is ruining my health and mouth. No doctor will listen. I have spent alot of money looking into everything and finding nothing. Even stool tests come up negative, a blood culture. I know I have Hashimotos because I have just a TPO of 15 and Thyroglobulin of 45. Can Hashimotos do this kind of damage to my mouth. It feels like my gums texture is falt and slimmy.
It could be that your immune system is atacking the gums.
You need to do some proper testing.
You need to start anti inflammatory diet asap and find the doctor who can read the blood markers that the other doctors can’t. Regular doctors won’t even run the proper tests because they always choose the very basic ones, the cheepest tests that show nothing. Unless you are on one end of the extreme or on the other end of the extreme , they will call it normal. No problems found, go home and take a chill pill.
Please check dr. Gil Kajiki and dr. David J Clark. Watch their videos on youtube.
I hope it helps!
How good is Dr Gil to see personally for hashimotos?
Could you share what was on the strict diet?
I’ve had tests for Celiac done and they came out negative. It took me another several years (and a move to Italy, the Heaven and Hell of Gluten) to finally realise that I have severe the intolerance. The thing is, I was bloated and severely constipated (bathroom every 3-4 days) since I was at least 8-9 years old, if not longer. No one has ever told me it’s not how you’re supposed to feel, so I didn’t know better. Gluten-free now for 1+ year and at least one of the problems went away. I’ve recently found out about FODMAPS and suspect I might have that since there are so many other foods that cause sever bloating :/