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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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After being diagnosed with Hashimoto’s in early December, I immediately went on a gluten-free diet and was then put on the paleo diet by my dietician. In still presenting with some minor bowel issues, my doctor asked if I had ever been diagnosed with celiac disease. I told him I had never been tested for it but that I didn’t want to return to eating gluten but he told me it was necessary to do a gluten-challenge so we could either confirm or mark it off the list. So, after being gluten-free for over 2 months, I began the gluten-challenge a week ago and I’m already experiencing horrible symptoms and am being referred to Urgent Care because of my symptoms. Symptoms include itchy lips when eating gluten, severe nausea, diarrhea, almost passing out, abdominal pain and tenderness.
I suffered from intense stiffness and aching in my legs for several years. Quite by accident, I discovered that the pain increased significantly 30 minutes after eating donuts, danishes, cakes, etc, but not after eating a candy bar or gummy bears, nor after eating a bagel. Clearly, the intense pain was caused ONLY after consuming items that involved wheat and a high level of fructose. Also by accident, I discovered that all the aching disappeared within 2 days of being on a HFLC diet. The stiffness remained.
Eventually the stiffness went away when I removed aspartame from my diet. I can now eat wheat products without muscle pain but admit I avoid donuts and danishes. They no longer cause pain but they do make me feel ill.
I conclude that my long term consumption of aspartame triggered or exacerbated a sensitivity to a wheat protein, especially when combined with fructose. (Btw, I also had MS-like symptoms that also went away when I dropped wheat and aspartame).
Chris: It was determined that I was allergic to wheat and dairy when I was 50. My initial reaction was, of course, denial. In my sixties, I made a concerted effort to be wheat free for breakfast and lunch, but would often succumb to that hot roll served when eating out. I then noticed that an hour later I would experience SVTs. In late 2014 I experienced a lone AFID episode. Conventional medicine recommended beta blockers and a blood thinner. However, I have determined that strict gluten avoidance works best. Any exposure to wheat will cause the SVTs and AFIB to return. McD’s French fries (contains flour) or roasted peanuts (dusted with flour) have both precipitated subsequent episodes. I firmly believe that the connection between gluten/gliadin and AFIB is much prevalent then we know. It is not easy to find a cardiologist who can agree to this.
I never had an issue with gluten until I had a severe allergic reaction to an anesthetic after a major surgery. I was 50 years old. Following that reaction it seemed like I became sensitive to just about everything. The moisturizer I had used on my face for two decades suddenly gave me a rash, peanuts never bothered me, I loved them and ate them often. Then one day shortly after the surgery I ate a peanut candy bar and couldn’t breathe. Foods I had eaten all of my life starting causing heartburn and alternating constipation/diarrhea. I saw an allergist, got my epi-pen, and kept discovering new allergies. The allergist gave me pills and told me something about mast cells I never clearly understood. My thyroid numbers went whacky, I started on Levoxyl. I felt like I was falling apart, I hurt all the time and was scared to eat things I had eaten all of my life. I gained weight. I had always been around 120lbs at 5’2″. I went up to 140 then 160 then 180 in a few years. I tried the no carb diet recommended by a friend. I felt better. I lost 25lbs. Then I went on a cruise and decided to eat what I wanted. I had my epi-pen just in case. The first afternoon I ate a lot of this wonderful french bread with lots of real butter and some fabulous tomato soup. It tasted so good! After lunch we went to our cabin to take a nap before sailing. When I woke up I literally couldn’t move. I hurt everywhere. Needless to say it was not a fun cruise. I thought I had the flu or something. When I got home I went back on the no carb diet and started feeling good again. I explained all this to my primary care doctor and he sent me to a Rheumatoid Doctor and for tons of blood work. They told me I had fibromyalgia, RA, and likely Lupus. I was stunned. It was the RA doctor who suggested I cut out gluten completely, as it inflames RA. I did so. I put other fresh carbs back into my diet and cut out all gluten, even hidden glutens. Three months later my bloodwork was better, the inflammation numbers dropped. Six months later I felt like I was back to my old self! My daughter got bitten by a venemous spider, soon after she started the same symptoms I had been having. Hers were more severe. Then my nephew burned fire wood with poison oak (by accident) and breathed the smoke. He had an anaphylactic reaction. Shortly after my younger sister was stung by a bunch of bees at one time and ended up in the hospital with severe swelling. Both developed issues with breads and pastas shortly after. My doctor told me that while it was not common, it was documented and likely related to a genetic auto-immune disorder. I know that all five of us are now gluten free and feeling fine. My doctors reversed most of the diagnoses. I still had to learn, tried bread again, felt bad again. Now I can tell in less than an hour if I have accidentally eaten gluten. My body tells me.
I also had my gallbladder removed, then a hysterectomy because I was anemic. But everything ramped up after an allergic reaction following the hysterectomy. My question is, have you heard of this before?
I went gluten free in 2011 when my gallbladder was failing but the doctors couldn’t tell me why. Two hospital visits and a suggestion to remove the gallbladder made me investigate the problem further.
I wasn’t ok with organs being taken out without a reason as to why they were failing. If there was an underlying issue, eventually it would damage an organ I could not live without. I had been suffering from chronic joint pain, daily headaches, terrible digestive issues and trouble sleeping for as long as I could remember. All of these problems stopped once gluten was removed my from my diet. The lack of joint pain was exhilarating.
If I accidentally consume gluten, I know almost immediately and am reminded of how awful I used to feel all the time. It was the best decision I made. I am happy to say that I still have my gallbladder (functions at 25%) .
Hi! I had the same issue. I have not redone the scan yet to see what my gallbladder now functions at. What was your number before cutting out gluten?
I have Anemia from CD
Other than that I have no symptoms
My Anemia was found during routine yearly physical
I eat TONS of gluten on a daily basis and have no side effects
Went gluten free for a month and felt no different
You may not feel that you are suffering side effects, but if you have anemia from CD, that is a HUGE side effect. Why would you continue eating tons of gluten when you know you have CD? It will destroy your intestines and health.
Hi Chris, I’ve been suffering from a terrible skin rash since February 22nd this year. It appeared the following day after eating a Reuben sandwich. I had been gluten free for about 8 years because my doctor discovered on some saliva and blood tests that I had high anti- gliadin antibodies. He suggested I stop eating gluten based on these tests, so I did. i never really had symptoms that I knew about. Anyway, I decided to eat the sandwich ( offered by work colleagues for my birthday) to see if I really had problems with gluten. I woke the following morning with a rash on my back. Over the next few months, it spread to my neck, forearms and thumbs, covered my entire back and then my face. During this time, I had several episodes where I felt utterly ill – feverish, achy, flu-like. I thought it might be lupus or rheumatoid arthritis. My Sed rate, ANA and rheumatoid factor all came back elevated but then the Sed rate and ANA were normal on another occasion. Now, it’s October 12, and I continue to have the widespread rash ( I’m on prednisone and steroid creams now since April), my ANA came back positive- speckled pattern, my rheumatoid factor is doubled and I have a positive smooth muscle ( f-actin). I’ve seen 8 doctors now, of varying specialty, and no one has any answers. I’ve had one scrape biopsy and 4 punch biopsies of the rashes – all say atopic dermatitis vs eczema withe lymphocytic infiltrates. CT scan shows bilateral angiolipomas on each kidney – 11mm on right and 9 mm on left. There’s a 3 mm “spot” on the liver. My lymphocyte count is elevated and elevated SPEP proteins. Based on any of this, can you possibly make a connection between the bread and my symptoms. Prior to eating the bread, I never had a rash. I’ve had some fatigue and joint pain for several years but I’ll be 62 years old in February and they say I have some osteo-arthritis. is it possible to be reacting to that bread all these months later??? I’ve been gluten free since May 30th, where I had a bite of breaded fish. I have since been extremely cautious to not consume any gluten. I on,y eat home cooked, fresh, whole food meals – no packaged or canned foods.
If you can shed some light on what might be going on, I would so appreciate your input. My doctor is at a stalemate and says he will welcome any thoughts.
Sounds like a pretty severe reaction to gluten, if indeed thats what triggered it. Have you had any heavy metals or chemical/biotoxins tests done?
Konagirl, I did have heavy metal testing – blood work but not the other testing you mentioned. I will take note for my doctor.
Oats … also a major culprit of gliadin that for me personally results in eczema type rashes.
I know this is an old post, but your symptoms remind me of a problem I seemed to have triggered a few years ago. I had a terrible rash which was diagnosed by dermatologist as excess, behind knees, behind ears, lower back, eyelids, calves, belly button, private areas…terrible itching, burning, redness, peeling skin. It took almost a year to for me to figure it out, but it turns out I can not eat anything fermented. If I do now the first clue I have set my system off is either my belly button or eyelids start itching and I know I have eaten something fermented. So no beer, sourdough bread, sauerkraut, anything with vinegar…salad dressings….soy sauce, soy products, the list goes on. Prior to my first breakout I had been drinking Kombucha every day (fermented) and taking fermented cod liver oil. I’m here reading today because I think wheat is wrecking havoc on my body with muscle and bone pain, no digestive issues though.
Eczema! not excess.
Hi, Thank you for this eye-opening article. The comments from your readers are enlightening, they make me want to try a gluten challenge and see if that’s where my issues stem.
I am wondering what you think about the connection between gluten sensitivity and adrenal fatigue. If one has spent their first 30 years consuming gluten when they are intolerant, would it come to a head and cause something like HPA Axis Dysfunction or ‘adrenal fatigue’?
Also, the symptoms of gluten sensitivity look so similar to multiple sclerosis, and do you think it could be possible that someone has had that for years and is now starting to progress and notice symptoms more, maybe even gluten is exacerbating them?
I have symptoms like blurry vision, tingling hands and feet, muscle tightness and tiredness with little use, fatigue that comes and goes, depression and mood swings, tinnitus, intolerance to heat, headaches.
I recently had a saliva cortisol test that I’m awaiting results for, and a neurologist I’m seeing for headaches is getting ready to do some test to narrow down things, like carpel tunnel and such.
Look up “leaky gut” or intestinal permeability as well as how dysbiosis (imbalance of your microbiota). Gluten in everyone, both CD and non CD, damages intestinal wall, and can impact its permeability, allowing things in your intesting to pass into your blood stream. Your immune system then reacts attacking all the molecules of partly digested food, pathogens and bacteria that “leaked through.” Its not only going gluten-free, its finding if you have leaky gut and healing it and eating healthy to re-establish the delicate balance of your microbiota.
Hi Stephanie, I became very sick a few years ago with many of the same symptoms you have mentioned. My first diagnosis was adrenal failure. It was nearly a year later when I was diagnosed with SIBO. I then began the low FODMAPS diet which changed my life!! I now know that I am very sensitive to gluten! Although I tested negative for CD. And my adrenals have been able to recover since restricting gluten, beans, and dairy
I have Hadhimoto’s and try very hard to be gluten free. After 8 weeks of no gluten , I fell off the wagon (cake). I kept up with glutenous food for 2 weeks and in this time I developed so many side effects it was disturbing and eye opening! I developed 2 yeast infections, rashes on my legs, intense itching, mouth sores, mucus in stool, bloating and overall depressed mood. It has never been more obvious to me the benefits of a gluten free lifestyle.
Amazing testimony- thanks for taking the time to share it! It will make many people think of doing their own n=1 experiment, including me.
OH my I forgot to mention the itching in my post. Maddening itching of my arms and head. My daughter has itching too, her feet and hands. It’s unbearable but goes away when gluten free.
My daughter hardly slept until she was two.By then, I decided to research on-line and figured out she was gluten intolerant; the worst side effect on her eating gluten while being gluten intolerant was restless leg syndrome (legs, arms and neck though) and after six weeks on a gluten free diet she started to sleep well. I read somewhere it takes six weeks for your body to clear up and in her case it was exactly that amount of time. I easily figured out I was also gluten intolerant (and maybe my pregnancy made my system have more obvious symptoms (they didn’t go away after delivery): fatigue,swelling of limbs, cramps and gassy tummy, mood swings…) and shortly after starting a gluten free diet I felt so much better than I have in all my gluten eating life!
I went gluten free a week ago and pooped without the help of laxatives. I do eat gluten free bread. I have had tingling in my hands and feet for many, many years. I also have severe muscles pain a kind of twisting of the muscles in my calves and arms, joints are very tight especially in my feet. I was diagnosed with MS but not sure that I really have it.
Other than finally pooping I do not feel any better. I have had severe long nasty toots for the past few months. I still have nasty toots and hoped they would have disappeared when I quit gluten. I don’t do dairy. I think I am sensitive to corn so I will be giving that up.
Will the nasty toots eventually stop? I am on a probiotic & vitamins/minerals.
answer to my own post:
My toots were caused by the gluten free protein bars I was eating. The Chicory Root was the problem.
The bloat is gone.
Hoping my other issues will also go away.
Chicory Root was the cause of my many stinky toots. I was eating gluten free protein bars.
Bloating is gone. Hope other issues will be resolved. I have only been gluten free 1 week.
Chicory root extract (insulin) in sufficient quantities causes severe trapped gas in a specific spot for me that can last for days. Very painful, count your blessings if your gas is getting out…
I can eat small amounts of it, but my first clue about a problem was years ago when I pigged out on some wonderful non-dairy ice cream (which ordinarily has no effect on me even in excess) that gave me the trapped gas for three days. It had 5 grams of fiber per half cup, which is unnatural for ice cream, all due undoubtedly to heavy dosing with chicory root extract. I have no problem with non-dairy Ben&Jerry’s or Breyer’s (both almond milk based), but neither one contains the dreaded chicory root. Cookies with it so they can claim high fiber cause trouble, normal junky cookies without it do not. Obviously sugar overload is not my problem.
Fiber One products are often a problem for people due to heavy use of chicory root extract. The company is in denial, claiming that people are just not used to high fiber. My body is very used to high fiber and I drink plenty of water, but chicory root extract causes problems for me anyway.
I stopped eating pasta a few years ago but I couldnt let go of bread, so I went with the darkest of breads and reduced my intake and dealt with the uncomfortable bloating, but recently Ive been taking a gelatine bone broth mix. I cant consume a broth as Im mostly vegetarian, so I put the broth in gel capsules and I have been taking it for 3 weeks – I can eat pastas and breads with no bloating, Im not sure how this is possible, but I thought Id mention it as it worked for me. There were other benefits too – more energy. I only resorted to this after a friends incredible feedback on her improvements in gut health. Im not sure if the broth is available worldwide but here is Australia ‘Best of the Bone’ was something I got from Flannery’s on the gold coast as I didnt want to pay for postage on their facebook page. I hope this post helps someone in Australia towards better gut health
Sharon, it takes time for all the symptoms to resolve. It’s been a few months since your original post. I hope that you have remained gluten free and that you are feeling much better by now.
Ever since last October, I’ve been having a foggy head, feeling bloated, fatigued and often a loss of appetite. I’m not sure what I have – wondering if it is a gluten intolerance. I don’t necessarily feel worse after eating gluten, and this goes in waves. Sometimes there are weeks where I feel fine, then there are weeks where I feel terrible.
I’m wondering if I should go gluten-free (and does this mean whenever I eat something with even a trace of gluten I have to start from zero?). I already tired, and failed, because I’ve been traveling a lot and it’s difficult when you are a guest at somebody’s house for a while, or in a foreign country.
In May 2015 my husband and I decided to go gluten free. Why, because he said gluten is bad for us and a young friend had told him about the changes in their family from trying this lifestyle change. His little brother and sister’s sinus issues were gone plus other health issues had cleared up.
My husband did a little research on gluten. We were 51 & 50, in fairly good health, we take no medications, but I was struggling with an ongoing urinary tract problem, painful feet in the morning, (I’m not overweight), bloating and rashes that would occur late in the evening. The other thing I didn’t notice until a few months later was I don’t sneeze every morning within the first 5 minutes of waking up. I thought it was my house or just “me.” I would need tissues throughout the day. I don’t need them anymore.
Actually, I didn’t realize how badly I felt until we were into the dietary change for a month and I noticed I didn’t have this bloating problem, the rashes and itches stopped, my feet didn’t hurt anymore and my rough skin on my arms cleared up and I don’t sneeze every morning and perfumes no longer make me sneeze.
This is the simplest health fix around but people freak out when you say thing like, “100% whole wheat bread is the worst food you can eat,” they don’t believe it because it’s shoved down our throats by doctors and most other health sources as necessary for fiber. Going Gluten Free is a mindset change from our programming and that is the hardest part for people. Taking a pill with 50 horrendous side affects seems more appealing for some reason, even though it never fixes the problem. Going gluten free actually fixes the problems.
If you try the diet, here are the reasons I believe you will stick with it.
1) How good you feel. Like I said before you won’t notice how bad you really feel right now until you get gluten out of your diet for a month. 2) When you eat the old foods you will be reminded of how awful you feel, because once you stop having the old pains you were living with: the bloating, acne and whatever else; when you eat that donut, it’s won’t take long for you to feel like someone kicked you in the gut and you’ll get the determination to stick with the diet and change your life. Or you’ll break out in hives or get a rash, like I use too and then you’ll be reminded not to do that again.
This is the simplest fix for poor health. There are no side affects, none. It’s not more expensive. We don’t buy much prepackaged food, that is the worst food around gluten or no gluten. We eat a lot of chicken, rice, veggies, & fruits. We keep fresh cut veggies and fruits on the counter for snacking, NO crackers, cookies, none. We don’t have a problem with dairy so we do milk, cheese and eggs too. We only use butter, no oils in a bottle either. We don’t drink carbonated beverages. My husband was a Pepsi addict. We also take plant based nutritional supplements which we have always taken but with gluten out of our diet they can actually work because our small intestine can now absorb the nutrients.
I heard a nutritionist say one time to eat food as close to the way God made it and you’ll be healthier. The more processed food is the worse it is for you. Skip the prepackaged, Gluten Free Foods and eat good meats and fresh vegetables and fruits. Once you get your small intestine healed you’ll be more satisfied too and won’t be searching the cupboards for snacks all the time. We have eliminated almost all of the 12 bad foods from our diet also. https://www.youtube.com/watch?v=9WCzq-a1z7A
I wish there were a conclusive test available! I need to know. . I have several vague symptoms but none as dramatic as some of yours. In some ways I wish they would be worse so my primary care doctor would take it more seriously. I have fatigue, aches, congestion, bloated stomach sometimes, sometimes a bright red rash across my face, dry throat, but it’s the persistent fatigue that really stymies me the most. I’ll have brief periods where I feel like normal and can get through my day but most of the time I’m struggling. I just went gluten dairy free for a few weeks but caught a cold and that threw my resolve off. Will try again. I did notice that the redness across my face went away. Tiredness diminished somewhat. SO HARD to stick to the diet. Being tired makes me want to reach for quick sugars like baked goods and bread etc.
There’s a chance you have Chronic Fatigue syndrome. I hope not. But it’s something you may want to look into.
Kim, I have had fatigue badly with withdrawal, so I brought some gluten free magnesium tablets and some gluten free sea kelp (iodine) tablets, also Vitamin B2 sublingual, these replace everything your body needs, I noticed a big improvement within 24 hours of taking my first lot of daily vitamins, a little more energy, a step in the right direction! So it maybe worth you getting some? I read somewhere else that your body lacks these giving up gluten and replacing them definitely seems to help
Vitamin B12 sublingual! Must be sublingual, that helps provide energy
thanks of you for giving me that advice. alas, i am couch and bedridden from severe CFS. i take all the supplements you mention. but, for someone who is less ill, i’m sure they will make all the difference.
I feel for you! I thought my case of fatigue was bad but I’m not couch ridden, not yet. Worried that’s down the line for me. My GP now thinks I may be suffering from allergies to mold and dust mites. Too much to get into here but am looking into getting rid of any potential mold and all the dust. Personally I think it’s strongly related to the wheat gluten. hoping to get Lyme tested next week. Anecdotally I know someone who moved from densely wooded suburbia to a new small condo on the waterfront and, amazingly, lost her CFS. It was a happy surprise. One of the reasons she moved to the unit was because she was so tired she couldn’t upkeep her house so they went off to a condo. I hope the best for you.
Supplements can contain hidden gluten. First make sure you are eliminating all sources of hidden gluten. I eat free of all food coloring, preservatives or additives, no gluten, no corn, no soy, and no legumes. I also have to watch for a few latex cross-reactive fruits/trees: passion fruit, acacia, agave and annato.
I had chronic fatigue for years….to the point of napping after driving to the grocery store, napping when I got home, wake up, eat breakfast and nap again. I finally found out I only have a sliver of thyroid gland left and that my body doesn’t respond to synthetic medications or supplements (figured that out when my B12 level was sky high – I had been taking cyanocobalamin).
Best is to get a micronutrient level test done to see if you have any nutrient deficiencies or imbalances. These can occur because you either do not ingest enough of a specific nutrient OR, somewhere in your body, it can’t convert the nutrient you ingested into the active level the body needs.
Just wondering if you are sensitive to the sun? When you mentioned the bright red rash across your face, that drew a red flag for me. There is an autoimmune disease called Porphyria. My father has it actually, and what tipped off the top gastro Dr for Porphyria was the rash across his face. He always suffered from abdominal issues, food issues, severe bloating, sleep issues…being sun sensitive is another symptom. It’s not something a lot of doctors know about, but the test is fairly simple; pee in a bottle for 24 hours. Hope you have some answers soon!
Gwen Have you tested for lupus? There is a red “mask” that lupus sufferers commonly get during flareups but they have periods of feeling well between flareups.
That fatigue started happening to me almost every time I ate bread
You sound like you may be gluten intolerant
Pamela’s gluten-free baking mixes make yummy baked goods, for when you have those cravings. Franz makes quite good gluten-free bread too; of all brands it’s the one I would have least expected, but maybe it makes a kind of sense. But if you have celiac, staying off the gluten is critical.
The “bright red rash across my face” sounds like the “butterfly rash” symptom of lupus. Aches (particularly joint) and fatigue are also a part of that disease.
Hi, I just found this thread and would love to hear your thoughts. I was diagnosed with Bipolar 1 several years ago. Several of the depressions that I’ve been through in life have been debilitating. I’m almost constantly fatigued, have brain fog and all other depression symptoms. My brother-in-law’s nephew had similar problems and went gluten-free. He was in his early 20’s at the time and I remember his face was covered in acne. About a month after going gluten-free, he was a different person. Very happy and out-going, which was not his personality at all before. Also, his acne totally cleared up. I went gluten-free on March 5, 2016, so it’s only been 19 days. Within the first couple of days I felt exactly like I had the flu except I did not have fever. It felt like someone had beaten my back with a bat…very, very sore. I’m extremely tired and lethargic but each night it takes me a while to fall asleep. I was nauseated and dizzy (which I’m still experiencing a bit). I also have the same old symptoms of depression. I was hoping that all of these are withdrawal symptoms, that I am gluten intolerant, and that they will pass soon and I’ll start to feel better. I haven’t read anywhere about gluten-withdrawals lasting this long so any comments would be greatly appreciated. Thank you! Jane
I am into week 5 gluten free, and I am only now starting to gradually, I mean gradually get my energy back, my night sleep is awful and that’s because I don’t have any energy to do much through the day, I have had my first day today where I haven’t fallen asleep, I feel absolutely exhausted, and hope I get a good nights sleep after actually getting over my anxiety and going out shopping! I have the odd good nights sleep now, but mainly only 4-5 hours sleep. It can actually take longer to recover from gluten intolerance than 4 weeks, more like 6! Especially if you do have an intolerance, and it sounds like you do Jane Langemark, stick with it and you will gradually improve, but when I looked into how long does it take to get over gluten intolerance? There is no specific answer as everyone is different
I am new to this thread and still trying to figure out if all these “symptoms” that I have had for most of my life could actually be caused by something as simple as gluten/wheat…
I have had IBS for close to 30 years with daily bouts of diarrhea. I can tell you that the times that I have had a solid stool were so few and far between that I actually felt like dancing out of the bathroom!
Headaches have been a several time a week occurrence. Joint pain in my hands and knees especially. Muscle cramping and living in a fog. Depression and inability to lose weight. I have forced myself into the gym for the last two years and fight a daily battle to do it. I go 5 days a week and work out for at least an hour to an hour and a half… I have toned up a bit but the scale has not moved… I also now suffer with melasma (this started a few years ago).. and i have a red prickly rash that covers my arms… it looks like i put reddish pink dye in my pores.. The kicker was that i started having numbness in my hands and feet while working out.. I started wondering if i had a circulation problem…
I went on Web MD and after clicking on the vast majority of the ailments that I suffer from it brought up Celiac Disease. I was a little shocked.. I have had elevated liver enzymes for years and no doctor could figure out why. I have had a scope… both ends and nothing… A biopsy was not done but the doctors wanted to do exploratory surgery… I refused.. Most doctors now think I am a closet drinker but I have an occasional drink and that is it. I started going gluten free and noticed improvements… I slip up once in awhile and end up with stomach issues and diarrhea the next day… Has anyone else suffered the melasma and elevated liver enzymes with this? What about the tingling in the hands and feet… Suggestions on if I should see a nutritionist or another doctor for some of the symptoms or just suck it up… I wish there were a way to be 100% sure… When I go out and ask for a gluten free menu my husband always tells the waiter that it is her “preference not an allergy”… Kind of pisses me off because my preference would be to eat the entire bread basket!
Tingling in hands and feet I have when eating gluten, I am totally grain free and dairy free, 4 weeks in now and finally getting rid of a lot of the withdrawal symptoms. The hands and feet are actually a clear sign of gluten intolerance, I have a severe wheat allergy, which was only recognised after I requested a celiac blood test, but couldn’t tolerate wheat until the blood test results came back as I nearly stopped breathing with anaphylactic shock!!! My doctor instantly diagnosed me with a severe wheat allergy and told me to go gluten free, but it’s more complicated than that for a wheat allergy!! And can effect neurological, I have MS. I also have arthritis, and reactive blood sugars, hopefully over the next 2 years I will prove to all my doctors and consultants that I don’t have anything wrong with me other than a wheat allergy, and I will be fighting fit again, only time will tell, but I have already removed the reactive blood sugars!!! And my knees have stopped aching.
About mid December this year, I experienced a sensation best described as an imaginary lump in my throat that I had become familiar with over the years. I had it diagnosed previously as a psychosomatic illness due to stress/anxiety (which it could well be) but this time my esophagus seemed to stay clamped up, and severe acid reflux took over my life during the holidays. Holiday food means rich cheese, wine, chocolates and of course home baking, so the acid reflux continued and progressively got worse as the acid burned at my esophagus. The mornings were ok, but by lunch time I was bloated and stomach acids were constantly burning away in my throat. When I finally decided I needed to figure out what was happening, my esophagus felt like a deflated balloon, like it was either stuck together or clamped shut. My first response was to remove dairy for a couple of days which did nothing, but then through researching GERD and acid reflux problems, gluten intolerance seemed to be the root of many of these problems. Day 2 of completely eliminating gluten and unbelievably my esophagus has relaxed, and my acid reflux has calmed down nearly 100%. But the most unexpected side effect so far has been a complete feeling of wellbeing. I feel so dramatically and suddenly good that I can’t imagine ever going near it again. My body cleary had just had enough. Funnily, the normally delicious smell of toast over the holidays made me feel nauseous. I know it is early days yet, but after researching gluten I think I have always harboured some of the less known symptoms of gluten intolerance and I’m curious to see if any of these improve with the change:
1. Despite being very healthy and leading a physically active and vegetarian lifestyle my joints have experienced inflammation, most notably I developed gnarly and enlarged knuckles in my 30s due to working with my hands and engaging in repetitive actions.
2. My upper arms have always had a sort of “chicken skin” rash that I accept as just part of who I am, and never thought to link to gluten. I’m curious to see if this will clear up.
3. My youngest son has kindly pointed out my “eggy” breath after eating pasta, not to mention my tiredness after such a meal.
4. anxiety, anxiety, anxiety
5. I once had some sort of prenatal scan, and the technicians couldn’t believed how much gas was in my belly, which we all laughed off as being a typical vegetarian!
6. Belly generally always bloated despite being a runner and leading a healthy lifestyle.
I can’t wait to see if any these other symptoms change with my new diet change, but given the shock my body experienced over the holidays, I’m certain I’ve found the culprit to my acid reflux. Due to my profession as a baker of gluten rich baked goods I’ll be curious to see if handling and breathing in gluten flour will have any side effects, but I’m sure I’ll eventually develop a new way of baking with new and non-glutenous flours.
YES! I had the same symptoms as you! I feel so much better now that I’m gluten free. Continue eating this way and make sure you use separate toasters, utensils, etc. . if you are making glutenous foods in your kitchen and eating GF.
Wheat causes heartburn for me. I can eat some as long as I don’t eat it every day and certainly not at every meal.
I don’t think the gluten is the problem in my case, though. I don’t have trouble with vegan products that list wheat gluten or wheat protein isolate on the label. So I think it’s something else in the wheat that is the culprit for me. I get heartburn from other varieties of wheat such as spelt or kamut also. Not sure about rye or triticale because I so seldom have those.
But I got used to varying my diet and not eating the same thing every day decades ago to deal with food allergies (I’m vegetarian but allergic to eggs and dairy, and for a while it seemed as though I could react
to anything so I rotated foods and ate 1-2 food meals several times a day). It’s really not hard especially if you eat simply and figure on getting balanced nutrition over the course of a day or two rather than trying to balance every meal. I use a free food tracker to check on protein and fiber, and it also makes it easy to watch that I’m not sliding into eating the same foods all the time. I generally hit all my basic food groups in a day: fruit, vegetables, legumes, nuts, seeds, grains, and sometimes miscellaneous like mushrooms and nutritional yeast (which combined with ground nuts and seeds is a great alternative to Parmesan cheese….).
I have no trouble with rice. millet, quinoa, corn, sorghum, teff, amaranth, tapioca, buckwheat, or bean flours.
I’m not organized enough to make vegan wheat-free flatbreads, but recipes on the net look easy.
I used to make my own large crackers from any flour-like substance with a tortilla iron or baked in the oven. Just add water as needed (oil and salt optional), take golf-ball sized clumps, roll them into balls and flatten them with the tortilla iron or between your hands or with a rolling pin. Bake until they taste right to you. Now I just buy the wide variety of GF crackers and good rice cakes/rice thins available today and also keep some GF breads in the freezer (wrapping individual slices or rolls in cheapie plastic bags). But just rice crackers or corn tortillas/taco shells work fine for sandwich fillings as toppers. I also get various GF pastas – now they’re easy to find, but many years ago some of the best blends actually came from Italy, which has a growing celiac population.
Reading all of these comments has been eye opening. I was diagnosed almost seven years ago with IBS, by ruling out many other diseases with radiological scans, colonoscopy, blood tests, and stool samples. It was brought on by treatment of diverticulitis with two strong antibiotics. I’ve been on a very long learning curve but, fortunately, ran across the website helpforibs.com early on. Since then I’ve been using their recommended fiber product and fennel tea faithfully, plus a probiotic. If I eat too much of the ‘bad’ foods: high fat, red meat, dairy (it’s the casein), caffeine, chocolate, alcohol, onions, garlic, high insoluble-fiberveggies and grains, I’ll be back in the bathroom. But more recently over a couple of years, becoming acute in the last few weeks, I developed a pattern of late-day bloating, flatulence, general GI misery (but not necessarily diarrhea), in addition to noticing my hair falling out, change in hair texture, skin rashes, low energy, and intermittent severe insomnia, poor memory, ‘fuzzy brain’, increasing joint pain, and other symptoms I may have overlooked or forgotten. I tested negative for CD last year and my doctor keeps telling me he doesn’t think I have gluten sensitivity. Three weeks ago I decided to try going gluten free. I wasn’t totally new to the concept because I tried it seven years ago and it didn’t seem to help. This time I’ve noticed a huge change: decreased GI symptoms, better sleep, and, most noticeably, a much higher energy level. Twice I added a small amount of gluten and was seriously unable to sleep most of those two nights (it also happens if I eat red meat). It’s still early in the process, but I’m hopeful that I’m on the right track. I’ve asked my doctor if there are any other tests/suggestions to help me on my quest for better health and am waiting to hear back (he’s consulting with GI experts). I may seek out a naturopathic doctor also.