I previously wrote an article called “Is Gluten Sensitivity Real” which critiqued a spate of news reports suggesting that nonceliac gluten sensitivity (NCGS) doesn’t exist. These news stories referred to a study indicating that some people who believed they were reacting to gluten were actually reacting to a class of poorly absorbed carbohydrates (which include wheat, among many other foods) called FODMAPs.
You can read the full article above for details, but the takeaway was that the study those stories were based on in no way disproved the existence of NCGS, nor did it overturn the large body of evidence that links it to a variety of health problems ranging from type 1 diabetes, to allergies, to schizophrenia, to autism spectrum disorders. There is little doubt among those who are familiar with the scientific literature that NCGS is a real condition.
Yet despite this, we continue to see headlines in the media like this:
- Time for Some Grains of Truth About Gluten
- Eat More Gluten: The Diet Fad Must Die
- Why We’re Wasting Billions on Gluten-Free Food
These stories—and many other like them—argue that nonceliac gluten intolerance is rare, and that people who eliminate gluten from their diet are just silly fad followers. In this article, however, I’m going to present three reasons why NCGS is not only a bonafide condition, but may in fact be a much more serious problem than celiac disease.
#1: Celiac Disease Is Far Easier to Diagnose Than NCGS
According to some estimates, for every diagnosed case of celiac disease (CD), there are 6.4 undiagnosed cases that remain undiagnosed—the majority of which are atypical or “silent” forms with no damage to the gut. (1) This silent form of CD is far from harmless; it is associated with a nearly fourfold increase in the risk of death. (2)
I believe that patients with NCGS are even more likely than patients with CD to go undiagnosed. Most gastroenterologists today know how to screen for celiac disease. They will typically test for antibodies to antibodies to alpha gliadin, transglutaminase-2, deamidated gliadin, and endomysium, and if positive do a biopsy to determine if tissue damage is present.
However, we now know that people can (and do) react to several other components of wheat above and beyond alpha gliadin, the component that is implicated in CD. These include other epitopes of gliadin (beta, gamma, omega), glutenin, wheat germ agglutinin (WGA), gluteomorphin, and deamidated gliadin. What’s more, people can react to other types of tissue transglutaminase, including type 3—primarily found in the skin—and type 6—primarily found in the brain. (3, 4, 5, 6, 7, 8)
Why the “gluten intolerance haters” are wrong.#gluten #glutenintolerance
So, imagine a scenario where the patient is reacting to deamidated gliadin, glutenin, gluteomorphin, and either transglutaminase-3 or -6, but not reacting to alpha gliadin or transglutaminase-2—which are the antibodies used to screen for CD by most doctors. They will remain undiagnosed, and may continue to eat gluten for the rest of their lives, putting themselves at serious risk for autoimmune and other diseases.
This is not a hypothetical situation. In fact, I see cases like this all the time in my practice. Here is a screenshot from a recent test I ran on a patient. I use a much more thorough test for wheat and gluten intolerance called Array 3 from Cyrex Laboratories. Unlike other tests, it measures antibodies not only to alpha gliadin and transglutaminase-2, but also many of the other components of the wheat protein I mentioned above, as well as transglutaminase-3 and 6.
This patient is not reacting to alpha gliadin or transglutaminase-2. Had they been tested by their conventional doctor, they would have been told that they do not have celiac disease or gluten intolerance.
However, as you can see, she is reacting quite significantly to several different components of wheat, including:
- Native and deamidated gliadin and gluteomorphin, which are compounds produced during the digestion of wheat.
- Glutenin, which is the other major fraction of the wheat protein, along with gliadin.
- Gliadin-transglutaminase complex, which indicates that the patient is experiencing an autoimmune reaction to wheat.
- Transglutaminase-3, which is expressed primarily in the skin, and to a lesser extent in the brain and placenta.
- Transglutaminase-6, which is expressed in the brain and nervous system.
When this patient consumes wheat or other gluten-containing foods, she may not experience the classic digestive symptoms associated with CD or NCGS, because she is not producing antibodies to transglutaminase-2 (which is mostly expressed in the gut). Instead, her intolerance of wheat could manifest in skin conditions like eczema or psoriasis, and in neurological or brain-related conditions like depression, peripheral neuropathy, or ADHD. (9, 10)
Worst of all, if this patient had not had this test, and had continued to eat wheat and gluten for the rest of her life, it’s likely that she would have been at much higher risk for the long list of serious conditions that are associated with gluten intolerance, such as multiple sclerosis, ataxia, diabetes, and even Amyotrophic Lateral Sclerosis (Lou Gehrig’s disease). (11, 12, 13, 14)
Unfortunately, this patient is not the exception—she is the rule. I’ve seen so many test results just like this, where the patient would have been misdiagnosed as not having gluten intolerance had they gone to a conventional doctor.
This presents another obvious problem, of course: if very few health care providers are doing the correct testing for gluten intolerance (like the panel from Cyrex above), then how can we possibly know what the true prevalence of NCGS is? We can’t—but given everything I’ve written above, we can certainly suspect that it’s much higher than currently believed.
According to Cyrex Labs, 1 in 4 people that take the Array 3 panel test positive for some form of wheat or gluten intolerance. Granted, this is not a representative sample, since most people that take the Cyrex panel are dealing with chronic illness of some kind.
Even with the limitations of current testing, however, some researchers have speculated that NCGS may affect as many as 1 in 10 people. (15) I suspect this is accurate, if not conservative.
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#2: Current Cultural Attitudes toward NCGS Mean More People Will Remain Undiagnosed
And for reasons that I do not fully understand, they do so with an almost religious fervor.
The “gluten intolerance haters” seemed to emerge in force after a paper published by Gibson et al. in 2013 made the rounds in the media. This study found that a group of patients with irritable bowel syndrome (IBS) were not sensitive to gluten, but instead were reacting to a group of poorly absorbed carbohydrates called FODMAPs. (16) Aside from the fact that this study did not in any way disprove the existence of NCGS, from a practical perspective the study findings would not have changed the behavior of most people with IBS who identified as being gluten intolerant, since wheat and many other gluten-containing grains are FODMAPs and should thus be avoided by these patients.
More importantly, however, in the last two years since the Gibson paper new studies have been published that directly contradict Gibson’s findings and strongly suggest that patients with IBS do, in fact, react adversely to gluten—and not just FODMAPs.
For example, a new double-blind, randomized trial out of Iran was specifically designed to determine whether a group of IBS patients reacted to gluten specifically, or simply improved for other reasons on a gluten-free diet. (17) Here’s how it worked:
- 80 patients followed an “almost-gluten-free” diet (dietary compliance was considered optimal if consumption of gluten was below 100 mg/day, the equivalent of roughly 1/8 tsp of wheat four).
- After six weeks, the 72 patients that complied with the diet and experienced significant improvement were then randomized into two groups: Group A, and Group B.
- Group A (35 patients) was given a 100 g packet containing a gluten meal (free of FODMAPs). Group B (37 patients) was given a placebo packet (100 g) containing rice flour, corn starch, and glucose.
- Patients in both groups consumed the powders for six weeks, while both groups continued on gluten-free diets.
After six weeks of the diet symptoms were controlled in only 26% of the gluten group, compared with 84% of the placebo group. In the gluten-containing group, all symptoms—especially bloating and abdominal pain—increased significantly one week after starting the gluten.
The authors point out that it is important to properly identify gluten intolerance and distinguish it from FODMAP intolerance because some recent research suggests that long-term low FODMAP diets may have adverse effects on the gut microbiome. One study found that a low FODMAP diet compared with a habitual diet reduced the proportion and concentration of Bifidobacteria, one of the most beneficial species of bacteria in the colon. (18) (Authors note: I will be exploring this issue in more detail in a future article.)
But I would add another equally serious consequence of misdiagnosing gluten intolerance as FODMAP intolerance, which is the increase in risk for numerous and sometimes serious diseases that occurs when someone with NCGS continues to consume gluten.
#3: Many Doctors and Patients Aren’t Serious Enough about NCGS Treatment
This last point is a natural consequence of the first two. If detecting NCGS in conventional medical settings is unlikely, and there is a strong cultural backlash against it, where does that leave the millions of people that are likely suffering from NCGS without even knowing it?
Even if they do suspect that they are gluten intolerant, they might be dissuaded from pursuing a strict gluten-free diet by their friends, social media contacts, or even their doctor, all of whom are likely uninformed on this subject and do not understand the deficiencies in conventional testing or the complexity of the topic.
Based on the research I’ve reviewed in this article, and several others I linked to here, we should be more aggressive—not less—in diagnosing and treating gluten intolerance.
We need greater access to test panels like Cyrex Labs Array 3, which is the only commercial test outside of a research setting that screens for antibodies to many of the proteomes in wheat, instead of just testing for alpha gliadin. We need better training for doctors on how to recognize the myriad of symptoms and conditions associated with gluten intolerance, so they don’t make the common mistake of assuming that the patient isn’t gluten intolerant if they don’t have digestive problems. And we need some prominent journalists to educate themselves, step forward, and take responsibility for treating this as the serious, potentially life-threatening problem that it is.
Even without access to tests like Array 3, an elimination/provocation trial where gluten is removed completely from the diet for 60 days and then reintroduced is still considered to be an accurate method of assessing gluten intolerance. Doctors should be much more proactive about recommending this to patients, and despite the claims of some mainstream nutritionists and dietitians to the contrary, there is no risk to removing gluten from the diet. (19) If anything, people on a gluten-free diet are more likely to increase their intake of essential nutrients, especially if they replace breads and other flour products with whole foods (rather than with gluten-free flour alternatives).
This may explain why up to 30 percent of CD patients continue to have symptoms or clinical signs after adopting a gluten-free diet. (21) For this reason, I recommend a completely grain- and dairy-free diet during the gluten challenge period.
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Might we stop comparing our health maladies, trying to claim who’s might be the worst? Can we all just join the conversation to share experiences that may help resolve the gluten problem with across the board?
I don’t have the problems many of you have. I do have Progressive Small Fiber Neuropathy that is scaring the life out of me. I won’t claim that this is a problem worse than some of the awful symptoms many of you have (it potentially may be) but am in this conversation to understand what may cause this and what I may do.
Lori,
*This is a bit lengthy, but I want to share my story in case it helps someone experiencing what I experienced feel like they are not alone. I know what it is like to try to find an answer. I spent many a desperate night searching people’s stories that might mirror my own …*
I had been suffering from a progressive Small Fiber Peripheral Neuropathy for approx 7 months. It had started rather subtly on my left leg and then progressed rather insidiously over several months, to the point where I was experiencing an unrelenting, creeping numbness on my left leg, bugs on the bottom of my feet, paraethesias in the form of vibration/humming sensations running incessantly down my left leg, and numbness on the left side of my face on my left arm. I also had a horrible nausea and a severe case of exquisitely painful chronic tendonitis in both of my shoulders. I had been to my doc too many times to admit during those months, who then sent me to a neurologist when his preliminary tests were normal … and then to a rheumatologist … only to return to the neuro 2 times when the symptoms were getting out of control and becoming more concerning. My doc, the neurologist and the rheumatologist all looked at me as if this were a perfectly normal occurrence in a 46 year old female who up until this experience was healthier than most people out there (no health history, no smoking, no drinking, healthy weight, loved exercised, and ate in moderation). In fact, rather disappointingly, my doc recommended in a very kindly fashion that I practice “mindfulness” on more than one occasion. I felt helpless because I knew there was something wrong, and I knew it was getting worse, and I couldn’t seem to convince any health care provider that my symptoms were not a somatic manifestation of emotional distress- which is what I think they believed.
Then one day, 7 months into this ordeal, my husband happened to be doing research to help me figure this out. He stumbled upon celiac and gluten sensitivity. I thought it quite a stretch since I didn’t have the classic GI symptoms, but remembered that my Aunt from Ireland was diagnosed with celiac 15 or so years ago and my mom died of esophageal cancer. With a little preliminary research I learned that celiac is an inherited autoimmune illness and that adult onset of this illness can manifest in non-GI symptoms such as SFPN. In fact, there is more and more evidence that suggests that more people have celiac but don’t know it because they present with no GI symptoms at all, rather they present with more neurological focused ailments.
I went gluten free almost immediately. Strict. Two weeks in, I got worse, and even got a weird, though impressive, itchy rash … cut to almost 4 months of being completely gluten free, however, and I can honestly say that all the symptoms I had experienced prior to going gluten free are better, if not essentially gone. On rare occasions, I have felt the subtly of numbness come back … I panic … then try to think about where I could have ingested gluten. Each time I was able to narrow it down- a bullion cube with barley extract one time and a marinade with soy in it another time…
When I went to my doc to discuss my thoughts about celiac and my family hx & other supporting arguments, I had another impressive rash (thankfully, something tangible for him to see that something is not right!) .. he decided to test for a couple of the celiac markers, but by that time it had been 1.5 months of a strict gluten free diet and it was an incomplete panel. So when I heard the markers were negative, I was not surprised. However, I took a genetic test for celiac and was found to be in the highest risk for developing the disease. Though the genetic test doesn’t diagnosis, it can help guide diagnosis in the context of presenting symptoms.
At this point, I know I am either celiac or it’s a gluten sensitivity. Either way, this former gluten loving lady will continue to avoid all things gluten. If my symptoms return while being strictly gluten, then perhaps it is something else. But each day without SFPN and all that goes with it … is well worth passing up all the delectables that come from gluten.
In the end, I do hope I have helped someone. It’s a very scary, lonely place to be … when you know something is wrong, but those in the business to help you figure it out aren’t willing to look outside of the box.
OMG I can’t thank you enough. I’m two months gluten free, but can’t say “strict.” That starts today.
I have the dang itch! And the numbness creeping up both legs, getting worse. No pain, yet, but am waiting. All blood tests are normal but unlike you, neurologist DID diagnose early neuropathy with an EKG, so a bit sunk there. Still think I can reverse this “idiopathic” thing so I also read, read, read desperately into the wee hours of the morning and hope beyond hope.
I’ve read all the gluten tests are non-conclusive, including the genetic one, so haven’t bothered.and there is no evidence of gluten issues in my family. For me, GF is a shot in the dark; there is nothing else to be done that I’ve found yet. I also am healthy weight- actually losing is a concern now, really active, never a drinker or smoker, ad nauseum.
Can I ask: did you avoid ALL grain? Dairy products? Anything else?
Yeah, even with all the forums out here, feeling alone in this search. And as noted, quite scared.
Thank you again for sharing your experience. Your story MAY help me!!
Hi Lori,
I’m so glad to have given someone hope. If it is celiac or gluten sensitivity that you are experiencing, you really MUST MUST be strict, as just a whiff of gluten can exacerbate symptoms or have them recur. In my case, it was the barely extract in the bullion cube and a smidge of soy sauce in a marinade. For me, someone who lived on all the delectables that gluten makes yummy, it hasn’t been difficult, and I’m surprised about that. It’s more an intellectual craving for those things then a physical one. If you are a cook or a baker, then you will have no problem making gluten-free things. Savory is super easy, it’s the breads, cookies, and the like that are more challenging. Even if you aren’t a whiz in the kitchen- which I am not AT ALL!- you will find a way, as feeling better is a great motivator to avoid the one thing that I personally in any other circumstance couldn’t have given up! I gave up wheat, barley, rye and oats (but only oats that I can’t confirm came from an uncontaminated source). I eat other non-wheat grains. Also, I don’t tend to go to restaurants unless they have a gluten-free menu simply because there is hidden gluten in almost everything processed!
Also, you MUST MUST give the diet time. I got much worse before I got better with exacerbations of existing symptoms which included a wonderful addition of burning sensations over my whole body and a new rash. But I would say by 2 months I no longer felt the bugs on the bottom of my feet & the humming/vibrations, the numbness in my face and arms, and the nausea were essentially gone. The numbness in my leg took longer to get better and it’s characteristics changed as time went by, but I chalked this up to what a healing nerve might feel like and the time it might take to heal. The shoulders have improved to the point where I can stretch without 10/10 pain.
I have seemed to develop a new dairy sensitivity or allergy and I had another episode of what my doctor said was urticaria (though what my body was reacting to, I haven’t been able to figure out). So I may have developed some new sensitivities with this whole thing. The dairy sensitivity is something that is manageable and I cannot think of giving this up at the moment until I am sure gluten was the culprit.
Even though it is in my family, it felt a real stretch to even consider it a gluten problem as the only GI symptom I had was nausea, but none of the other debilitating GI symptoms that classically define celiac. However, the research I have done suggests that adult-onset celiac can present with neurological symptoms without GI symptoms and that they are thinking the neuro symptoms may be the “canary in the mine” to the onset of GI symptoms. You are right, the blood tests are unreliable and the genetic test doesn’t diagnose, though the genetic test is reliable in helping determining your genetic risk of developing the disease. In other words, it can help rule celiac out and help guide diagnosis in the context of symptoms after having gone gluten free. For me, even with my family history, the genetic test results, and the rash, the diagnosis of celiac is only presumptive. So, it doesn’t matter what I call it. I just know that being gluten free has helped me immensely … and only time will tell if gluten is really the problem.
Remember “idiopathic” just means they haven’t figured out the reason behind the illness. In all of our cases, there is a cause for our symptoms. Even if it’s not celiac in both of our cases, it very well could be a gluten sensitivity (which in my anecdotal case is, in the very least). What makes this possibility more concerning then even a celiac diagnosis, is that the understanding of this is in it’s nascent period. So we don’t really know what this means in terms of risk to our long-term health and our ability to function both physically and mentally in the future. And that is scary. As horrible as celiac is…. and it can be abjectly so … the disease, it’s treatment, and the risk it portends is more thoroughly researched and much better understood.
I really hope this has helped.
Again and again, THANKS!! And YOU know how much this has helped!
I’m reinvigorated on my mission, one of being GF as well as the more important one: of hope. Tough time to be so strict, going into the holidays, but as you noted, the diet really isn’t otherwise so tough. Actually has made me eat so much better, which I do believe is another facet to resolving this PN dealio. This also makes the journey more tolerable; I was told I wouldn’t know if GF worked for up to, or longer than, a year. In my life now, no problemo.
Along this adventure, I also have learned that medical practice is just that- a practice. I, we, are truly our best advocates, and I often enter a doctor’s office with as much info as I leave with. These visits have become conferences at best.
Love reading your posts (to me:o). They confirm and build on my thinking.
Best to you and yours, thanks again, and here’s to health!
I by-passed two major health hurdles once I discovered I was gluten-intolerant (gene-tested). Twenty years ago, I was diagnosed with fibromyalgia by Mayo Clinic/Jacksonville. I used to teach college but, sadly, had to quit. Instead, I started writing … anything really… poems, novel, scripts, the best I could do after a few years of being virtually comatose. That creativity at least made me feel somewhat human. Fifteen years ago, I started experiencing discomfort in my lumbar area when sitting at the computer. At its worst, that little triangle at the tail end of the spine (no pun intended) would puff up. I started noticing my left leg dragging when I went on walks and, sometimes, weird tingling and shooting pains up the leg. An MRI showed a cyst impinging on a nerve. The neurologist told me I needed surgery and, if I didn’t have it, I would eventually become permanently incontinent and paralyzed from the waist down. At that time, I was moving to CA from FL and decided I would look into it when I arrived. I researched and researched any way I could deal with this new issue without surgery (as the cyst’s location required a Z cut into the front of my body; it couldn’t be done from the back). I was preparing myself for a new procedure by a CA doctor I discovered: an injection of a glue-type substance that stopped the cyst from growing … the only problem was it could caus meningitis if pieces broke off and traveled to the brain. I was willing to risk that rather than the surgery, which, I read, had totally disabled some who had it. At this juncture, a friend of mine told me she worked with someone with fibro who helped himself immensely by going off gluten and dairy. Before I set up that cyst appt., I had myself gene-tested. Within 3 days of being off gluten, I felt like a different person. I literally went dancing that night! My widespread pain had vanished. Although the exhaustive fatigue, brain fog, etc., didn’t go way, it was still a major change in my life. I could function better than I had for 9 years. Even better, I also discovered, almost miraculously, that my cyst symptoms vanished as well! I could walk again without my left leg dragging or feeling those weird shooting pains. It has been 12 years since being off gluten and dairy; the cyst and its symptoms have never returned.
I know the feeling….gluten gives me migraines …..I also react to coffee and coconut. Internet searches talk about “cross reactivity” who knows…I just do whatever it takes to avoid the pain
Hi Lori,
Just a quick one , I have just read your comment & the various symptoms you mention lead me to ask you whether you have been prescribed fluoroquinolone antibiotics at all ? , either recently or perhaps sometime in the past. These so called antibiotics are not your usual penicillin, but instead they are extremely dangerous topoisomerase inhibitors , they are actually failed chemo drugs masquerading as ‘ antibiotics ‘, & they are devastating countless numbers of lives.
Please note that our allopathic Drs worldwide invariably do not have a clue just how dangerous they are, despite the FDA yet again being forced to update the warnings on them.
Fluoroquinolone so called ‘ antibiotics ‘ include those such as Cipro , levaquin , Avelox, & there are various others including generic versions, topical versions, & ALL FQs whatever mode of administration, can result in exactly the same damage .
I strongly recommend googling fluoroquinolone toxicity, fluoroquinolone associated disability ( FQAD ) to learn more, in fact i would recommend that everyone who comes across this comment does so.
Forewarned is forearmed.
http://www.fda.gov/Drugs/DrugSafety/ucm500143.htm
Thanks for the note about antibiotics.
I haven’t taken any for at least 10 years, and have no idea what I might have taken before that.
This is FANTASTIC info for those who are not in the know yet; unfortunately, it never seems to seep down to those unknowing and unsuspecting.
My initial post was about loosing the feeling in my feet. All the nephropathy symptoms were definitely no fun, for many years. Going GF has reversed the loss of feeling in my feet. Not 100%, but sufficient to walk around the block without feeling like I might stumble and break my neck. I suspect I spent too many years (66) getting to where I was before going GF. I knew many years ago that I probably had a problem with absorption of the nutrients in my food. I only changed my diet to more nutrition for the calories. After taking some Biotin for other reasons I started feeling a change in my feet. That started my research online that led me to Gluten Intolerance. I wish I had known years ago. I have suffered a lot of things that may well be related including lots of chronic pain. When the feeling started coming back in my feet I felt more pain, but I expected that. The pain has been slowly subsiding. The pain probably will not totally go away until I am 6ft under. That is the problem with not discovering Gluten Intolerance until rather late in life.
I am so sorry, but this is complete b******t. I understand that the stigma surrounding intolerance not good: gluten intolerance is real and needs to be addressed. But Celiac has ruined my life. I can’t eat out with friends. No one can make me dinner except for myself. I have extreme anxiety otherwise, to the point where I give myself psychologically induced nausea. Contamination HUGELY increases the risk of cancer, particularly leukemia. I am nauseous everyday of my life though I have been gluten free for years. I attend college and throw up during class- but I always return. It’s is my life. The results of gluten intolerance are terrible, but are no where as damaging or permanent as those caused by Celiac. It is completely ignorant to claim that gluten intolerance is more damaging than Celiac. The gut damage caused by Celiac is often permanent. I am extremely malnourished and underweight- I have been at a healthy weight my whole life. I ran six miles a day. I can barely walk to class now. I have to take breaks and sit down on the curb. I really appreciate your bringing attention to gluten intolerance- it needs to be done. But the specific part of the article I am referring to is COMPLETELY wrong.
So you don’t think it’s a problem at all that people (like I was) are just randomly and seemingly getting drunk all the time on gluten (the growing term is ‘glutened’) without this clear problem being traced back to their gluten-filled diets?? As though people are just supposed to tolerate their random sleepy sessions, blame it on age maybe.
When people like me go to the doctor, the doctor won’t run tests on us for NCGS because: A.) They don’t believe in it. B.) If you don’t ave Celiac Disease, there must be nothing wrong with you in relation to gluten and C.) ‘We can’t test for NCGS even if you have had been told you don’t have Celiac’.
At least YOU as a bonefied Celiac can get LOTS OF HELP from other people who have your condition, even grants, moral support, public awareness that recommends for gluten-free food to accommodate people like you. People like ME have NO CHANCE because we’re not diagnosed with anything. It’s just assumed that we’re lying about feeling drunk after months (even years!) of tracing our intolerance to gluten!
I swear to God, this NCGS is a MASSIVE HIDDEN PROBLEM, misses, and you need to get your head out of your Celiac arse and help those, like me, who have FUCK ALL THE HELP THAT YOU HAVE!!!
And FYI, I actually have Hashimotos Hypothyroidism which is an automimmune disease flared up by gluten proteins like wheat, barley and rye but because it’s not Celiac Disease, no-one cares! No doctor told me to stop eating gluten when I was diagnosed even though it’s evidently been slowly killing me for years!
This is the same situation with NCGS but they can’t be diagnosed (as of yet.) You should feel bad for them- I KNOW I DO.
You think I can go out eating with friends, Jessica? You think I’m not exhausted every day? I could go on but I don’t think you know anything about Hashimotos Hypothyroidism.
I have extreme anxiety, Jessica Rae- I feel cold all the time, my metabolism barely works, I’m prone to getting massive goitres (the size of frickin’ cricket balls) at the front of my throat, I can have seizures and go into comas if I don’t take Levothyroxine for long enough periods, I gain weight like it’s nothing because of my lack of metabolism, I’m infertile, my gut is irreparably damaged- the fili in my gut lining can’t absorb nutrients! The list goes on.
I was joining the British Army at one point, used to run 5 miles a day up and down steep hills. You think I’m a lazy git? You think your Celiac Disease is worse? Imagine being under nourished and over weight even though you clearly under eat because you’re trying to join the Army?!
YOU HAVE NO IDEA WHAT OTHER PEOPLE FACE!
NO doctor told me to quit eating gluten when I got diagnosed with Hashimotos! I had to go and research for myself but at least I had the terms ‘Hashimotos Hypothyroidism’ to follow. People with NCGS, who can’t be diagnosed, have got nothing to go on apart from clearly having a gluten intolerance that can just be brushed off as being bullshit.
Thank you sincerely for sharing your situation. The debilitating effects of gluten on gluten-intolerant, non-celiacs are made clear in DANGEROUS GRAINS by James Braly and Ron Hoggans. Appendix D cites 187 “gluten-associated medical conditions.”
I am sorry you felt so offended Marley, but I truely believe you misread the tone of my comment (you may have found my language extremely offensive, and for that I apologize.) You clearly have more than gluten intolerance, and therefore I was not referring to your condition. As I said, gluten intolerance is very serious and needs to be addressed as a very real issue. But to claim it is more damaging than Celiac is absolutely ignorant. I am not saying that gluten intolerance doesn’t deserve more attention than it is currently getting, as it clearly very much does. I do not believe it is true, however, that gluten intolerance causes more damage than Celiac disease over the long term. I do not have gluten intolerance. I have Celiac disease, so I know what it is like to have gluten intolerance- only there is an autoimmune reaction, similar to your condition. Gluten intolerance does not cause the same damage as an autoimmune reaction. Yes, it negatively impacts people’s lives in a terrible way. But to say the damage caused by Celiac is less than that of gluten intolerance is wrong.
“You think I can go out eating with friends, Jessica? You think I’m not exhausted every day?”- I do not know your own struggles with your conditions. I did not say that gluten intolerance does not cause these things. But the sensitivity and severity caused by Celiac disease is on a higher level than that of gluten intolerance.
“You think I’m a lazy git? You think your Celiac Disease is worse?”- No where did I say anyone is lazy- living with gluten sensitivity is one of the hardest things a person can deal with. But yes, I think my Celiac disease is worse than gluten inolerance.
“So you don’t think it’s a problem at all that people (like I was) are just randomly and seemingly getting drunk all the time on gluten (the growing term is ‘glutened’) without this clear problem being traced back to their gluten-filled diets??”- “I understand that the stigma surrounding intolerance not good: gluten intolerance is real and needs to be addressed… The results of gluten intolerance are terrible, but are no where as damaging or permanent as those caused by Celiac.” [From my first comment. I clearly believe this is a serious issue.]
“At least YOU as a bonefied Celiac can get LOTS OF HELP from other people who have your condition, even grants, moral support, public awareness that recommends for gluten-free food to accommodate people like you.” -None of those things will ever allow my permanently damaged gut to heal. None of those things will relieve my symptoms.
“I swear to God, this NCGS is a MASSIVE HIDDEN PROBLEM, misses, and you need to get your head out of your Celiac arse and help those, like me, who have FUCK ALL THE HELP THAT YOU HAVE!!!” – I also agree that this is a massive issue. I ALWAYS offer advice to those who are having symptoms similar to mine- I always tell friends to speak to dieticians and gastroenterologists.
You’re allowing your anger to overcome your ability to reason logically.
I’d be open to changing my mind, honestly, if you provided a more intelligent argument. But right now, I really have seen nothing to change my thoughts. Rather, I don’t want to engage in conversation with you or other gluten intolerants for of being lashed out at. Rather counterproductive, no?
And I find it rude that I in no way was trying to target or offend anyone, yet you began to personally attack me. I was simply stating my opinion and my experience. And I’d love to hear responses! But there’s no reason to be immature and offensive.
I absolutely agree. I too have real diagnosed Celiacs with a Celiac mother and was very angry to see the title of this article. I didn’t have to read it to know it is total BS. I’ve had symptoms all my life. I know what you are going through because I too cannot eat at people’s houses or most restaurants. The only true way for me to feel safe is to make my own food. Anxiety with food choices happens to me too. I also think gluten free should be redefined as no part per million because I cannot have any part per million. Corn and quinoa are also a huge no for me. Corn was domesticated from a grass similar to wheat and contain a gluten tht is too similar to wheat. It angers me that corn is a common ingredient replacement in “gluten free” products. It gives me the same symptoms as the other gluten foods. Also, corn starch/gluten is hidden in most pain pills and the cheap vitamins. Celiacs complain that they are not getting better. These and hidden gluten are the reasons. If the ingredient says *spices or natural/artificial (insert type here) flavor, then there is gluten in it. The FDA and typical physicians know close to nothing. Best to get a DNA test too. Mine said I have 2 of the 3 celiac genes and a 90% chance of developing it.
Hi …sounds like you are having an awful time. I am not celiac …no igA antibodies…but I do have an uncle who does have a celiac diagnosis. I have IgG antibodies to wheat /gluten (and soy) and I think it gave me awful migraines.(doctors do not agree) I have gone gluten free and got rid of the migraines….changed my life. I also have problems with coffee and coconut….and all this seems to have got much worse as I reached my late 40s (although I have been headachy all my life) I am self diagnosed….and doing better now than I have in years. Going gluten free is hard work… the stuff turns up everywhere (malt…maltodextrin…..dear me I have made lots of mistakes) I hope you find the answers to your issues
I’m off to the doctor on Friday. I was diagnosed with eczema about 15 years ago that was being treated with a prescription cream with little effectiveness. I was told it was stress related. Over the years, I’ve had chronic nausea, a foggy brain and diarrhea often…all which I just assumed was stress. Well, 4 days ago, I had a bowl of cereal and 20 minutes later was covered in hives. Then the pukes hit. Looking online, my symptoms indicate either a gluten intolerance or celiac disease. For 2 days, I consumed nothing with gluten and the rash started to fade. This morning I had Chex and milk…chills, horrible itching and the pukes again. Now I’m reading I could also have a lactose intolerance. Now? At 39? Weird. I’m getting tested because now I feel like puking no matter what I eat and the rash is out of control. I think my body has just had enough of me ignoring my symptoms and is totally revolting on me. I pray for everyone with any kind of food allergy. This is miserable and scary.
Looking back, I believe I was exhibiting gluten intolerance symptoms for quite some time – the typical bloating and gas, etc. So eventually, I thought I would try to keep wheat out of my diet, and largely did but thought that eating it might not hurt occasionally. One of my knees was starting to hurt – it became very swollen. Around this time I went to stay with my daughter for a few days and became tempted to eat some of her delicious home-made bread, although normally at home I hadn’t eaten bread for some time. When I returned home, the knee was painful enough (I had to use codeine for pain relief), that after a couple of days I finally went to the doctor. Subsequent blood tests revealed a very high rheumatoid factor reading. Immediately after returning home from my daughter’s place, I had completely eliminated wheat from my diet, and as well kept sugar to a bare minimum. What a difference – within days, the swelling in my knee was going down! Recently, after visiting family and being tempted to eat food labelled gluten-free and then also having a little of ordinary wheat-based food I suffered from a nasty rheumatoid arthritis flare up. I had been becoming a little complacent up until recently, thinking a little now and then would be ok – I could “get away with it” so to speak. But it’s time for me to get really serious about avoiding wheat completely. (I have never had any medical testing for coeliac or NCGS, but I think my experiences speak for themselves. What do others think, please?
Hiya … the doctors do not agree with me but gluten gives me migraines (I do not have IgA antibodies and so do not have celiac) But I do have IgG antibodies to wheat/gluten. Interestingly I also have a problem with my knees – cartilage under kneecaps is wearing away (this does show up on scans)
I have read everything I can on this subject…there are schools of thought which say gluten can cause this…but there are also schools of thought that say that ibuprofen (that you take for all the headaches) can also cause it…..who knows…..I have gone gluten free and ibuprofen consumption also much reduced
I also had 1-3 monthly classical migraines (neon zigzags, 20 minutes of half vision, unrelenting pain for 3 days) until finding I had the gene for gluten-intolerance and got off gluten & dairy. I now have 1-2 migraines a year, and they are light-weight by comparison. I also was told I needed a dangerous major surgery for a cyst on my lower spine. The neurologist said I would become incontinent and paralyzed if I didn’t have the operation. Very fortunately for me, I was getting off gluten at the time of diagnosis. Within weeks, all my cyst symptoms went away. It’s been 10 years and everything is still fine. The surgeon couldn’t believe going gluten-free made the difference. She said, “That’s impossible.”
I have a suspected case of Gluten Ataxia where the autoimmune response happens in my cerebellum. I collapsed on the street around 3 months ago unable to coordinate my body to walk, and lost speech. after 2 weeks of bouts of severe ataxia someone suggested me to go GF. I’ve been on GF since but still trying to learn how careful I need to be with food. If I cook my own meal I’m fine however I discover that my body is getting increasingly sensitive to gluten longer I’m on GF. I get glutened several times when eating out in a non 100% GF restaurant, but ordering GF food from GF menu. Now I realise that I cannot have any trace gluten so I’m only comfortable eating in 100% GF restaurants. I have very mild gastro symptoms but very pronounced gait ataxia, and dysarthria. I’m still waiting to see a neurologist in the UK but the waiting time is long. I did get tested positive for AGA IgA but not TG2. I’m trying to minimise consumption of GF products since my condition is still unstable and I dunno what my tolerance level for trace gluten is at the moment. My attacks are episodic and definitely linked to environmental triggers hence I suspect food related. I can eat dairy without issues though. The only trigger at the moment seems to be gluten. I have extreme fatigue, poor attention, sensitivity to light and movements when I have an episode. I dunno how rare my condition is but I’ve not met anyone with gluten ataxia yet… kinda lonely not being in a community haha. I think ppl with gluten sensitivity should cut out all gluten cuz u never know whether will turn into a serious autoimmune disease like mine…before this happens I’ve been dealing with bouts of unexplained fatigue and depression for a few years. Since adopting GF diet I have not had such terrible mood swings.
I had a serious dairy problem and eliminated my gut discomfort by eliminating dairy completely. I also suffered from serious menapausal symptoms to the point I felt like it was ruining my life (home and work). I was only 35 when this began. I am now 42 and after complete desperation cut out all gluten as well as continuing to be dairy free. Much to my surprise and excitement, my symtems completely went away after about 4 months. I mean soarness everyday, hot flashes, terrible night sweats nightly, and missed periods for months. Gone. I am so relieved. I was tested for celiac and told I do not have it. I did this experiment on my own. People think I’m just a paranoid eater and I do feel awkward but I learned to plan ahead. I look at menus beforehand and act as normal as possible in group eating times while sticking to my diet. I wish someone would give me the proof that everyone else seems to need but for me alone I know I have a problem with gluten. I do feel alone with my problem but am ecstatic over the relief. I’ll never eat it again if my issues stay away.
Is it better to have occasional gluten to lessen the immune reaction of avoiding it completely (but having inadvertent exposure) if you’re not celiac but have ncgs? There is the concept that moderate occasional exposure is better bc the reaction is less extreme than if someone avoids completely but gets glutened eating out
I’m so glad you asked this question, Margaret. I have Peripheral Neuropathy and all gluten tests come back negative. I’ve never considered that I had any sort of gluten intolerance before developing this, and still don’t, but for the prognosis of PN, I HAVE to try being gluten free. I’ve been on a GF diet now for 3 weeks (big deal, I know) and don’t expect PN to improve (yet, but praying!). But am curious as to what others say to this question.
I guess this sounds like I want my cake- pun- and eat it too. :o)
I also had PN symptoms for a couple of years, on and off. Due to other issues such as unexplained weight gain over the course of 5 years, upper respiratory issues, and repeated sinus infections, I tried a gluten-free diet in the summer of 2014. After 4 weeks, all PN symptoms were gone!
I never bothered with the Cyrex Labs test because after living through the results of GF first-hand, it wouldn’t really matter to mean if the tests came back negative.
I did not know there was a gene test available – thank you Laura. The gene test is interesting to me, and I will look into it further. If anyone knows more, I would appreciate your input.
No being gluten free is 100% or nothing !There is no middle ground. Even the slightest trace will cause damage. I once had a bad reaction to kidney beans due to contamination from grains grown nearby. So if is not certified Gluten free I skip it!
I was diagnosed with celiac disease in 3rd grade. Before I was diagnosed I was always sick and had already been in the hospital 3 times. Gotten blood removed every day (seriously.) until my arm started turning purple where they injected the needle. Finally I was diagnosed with CD it sucks. I love food so much that whenever my family orders Papa Johns pizza and I’m stuck with sandwiches and gluten free pizza. ;( Sometimes I sneak a piece or two ? Later in 5th grade my immune system was still pretty weak from CD since I had wheat all the up until 3rd grade which is pretty long… I got Walking Pneumonia (It’s called that because you can just walk around with it and not know that you have WP) Which weakened my immune system even more. So much, that I fell a victim to SJS (Steven Johnson Syndrome) I got blisters everywhere my eyes had blisters in them and they were red and dried out. My lips weren’t stuck together by blisters and I had to pull them apart which hurt like heck!! I had a feeding tube put in 3 times because I puked it up on accident a couple times. I was on morphine and it upset my stomach that’s probably why i puked. After 2 and a half weeks I finally got out of the hospital and went to school the next week. I ocasionally get sick from wheat. You can get cancer and even diabetes from CD. There are also many symptoms such as indigestion, diarreah, nausea…etc. If there’s something worse than this. I feel for them ?
I suffer from celiac disease and whenever i get wheat or gluten in my system i puke blood for over 24 hours without a hospital i will die from this and it’s really ignorant of you to claim that non-physical reactions like these stated are worse than dying by puking until you die. Between the ages of 6-10 i got sick over 20 times and had to go to the hospital constantly since people didn’t take it seriously and pathetic articles like this one are really not helping.
Albin, I don’t believe the doctor was trying to minimize your condition–it is a difficult life to lead, that of a Celiac. I feel for you. I simply believe he was attempting to use a rhetorical technique to demonstrate to others the severity of the gluten intolerance compared to a condition that others already understand to be debilitating–Celiac’s. Instead of dividing, I believe he was trying to unite. We all need to support one another in this road of perdition called life.
While I never vomited blood–how traumatic for you– I suffer from a dairy and egg (possibly gluten, which I am exploring now) that caused me with nausea and vomiting which made my daily life dysfunctional. Instead of a few episodes of near death issues, I experienced a decade of constant torture, literally living in fear of what each day would hold for me, wondering why this all was happening.
I believe that both ways of living are detrimental to our human experience, and anyone that tries to make it better for someone else isn’t attempting to sow discord in another’s life as a result.
Best of luck to you.
Totally agree with you Albin. I have severe acute ulcerative colitis and I’ve been on a strict SCD diet for a few years now. Wheat along with corn, sugar, and chocolate products cause me the worst problems. I’ll uncontrollably lose blood and be in severe pain that takes usually takes a prednisone burst and days of not eating to get through.
This whole nonsense of poor gluten intolerant people makes it hard for people with actual allergies to be taken seriously. If your intolerant, you avoid it. If your allergic it’s an actual medical issue.
I’m sorry your “intolarance” makes you uncomfortable, but If you’ve never blacked out from pain while using the bathroom or know what’s it’s like to be in a state of constant anxiety that you will lose control of bowels at any moment I don’t really think you can say it’s on the same level, let alone worse.
I can totally understand Albin’s position. People don’t take it as serious as they should because of these garbage articles.
^^^ I have Celiac too and I totally agree. I just posted a comment below about my experience. It is complete IGNORANT and WRONG to claim that gluten intolerance is more damaging than Celiac.
Gluten takes a while to build up in my system when I go off the wagon. I tell myself it’s not so bad, but then after a week of sporadic consumption, the back of my neck, lower scalp and upper back is broken out with cystic acne. It happens EVERY time. It took me a while to realize that is also causes me to be extremely tired, irritable and have no energy. When I stopped and paid attention to the patterns, it was so obvious. And the hard part is that I can’t just shake myself out of it. It takes me a week or two to get the gluten effects out of my system. So I’m stuck with exhaustion, depression and nasty acne for one to two weeks and can’t do a damn thing to change it. I just endure it and cut out all gluten until I feel back to normal. I’ve never heard of anyone having it affect them like this. This is just what happens to me.
My son has a gluten sensitivity that seems to get worse every time we are 100% clean and the something accidentally happens. We have noticed fhe same 1-2 weeks it takes to clear out and his behavioral symptoms to diminish. He will “script” or repeat himself, exhibits OCD with liquid, bouncing off the walls, and has extreme difficulty talking at the correct pace.
It is one hundred percent attacking his brain. Anyone the can provide and insight to getting gluten out of his system faster is welcome to comment. Thank you!
I get this same thing! You are NOT alone. Same pattern and similar symptoms. There is no one to back this up and I sometimes feel paranoid and very alone. But having almost totally disabling chronic fatigue syndrome that again no one will diagnose and treat means I HAVE to admit to myself that it is gluten, sugar and milk that ate doing this! My sister is diagnosed as Celiac Disease and her effects are much like mine. But I have been told I do not have it. So either gluten intolerance is a serious health problem in itself or I am getting up to getting full blown celiac disease! Either way..am I really going to continue to take such a gamble with my health and life. I say no. Gluten sensitivity haters do your worst. I don’t care anymore. It’s my life.
This happens to me as well!!!!
Hi Sarah,
I know you posted this a few months back, but I have the exact same symptoms you.
When I eat gluten-ous foods (that are also usually processed and high in sugar) for a week or two, my body always breaks out and I sink into a depression. My face never breaks out, but I get zits on my back, neck and elsewhere. I always feel a general sense of hopelessness, coupled with shame at the acne.
Sugary alcoholic beverages (cocktails, wine, etc.) also seem to push me over the edge and spur a huge breakout.
I view it as my body ridding itself, physically, of something that it deems poisonous.
I’ve found a few ways to cope with it– ingesting high amounts of chlorella in water to “detox”, avoiding processed carbohydrates and sugars, taking b vitamins every morning to help with the depression, and drinking a lot of kombucha and other fermented drinks to help cleanse my liver and detox my system.
I wanted to thank you for posting your comment, Sarah. Only recently have I dealt with the acne and crippling depression during “cheat weeks” or vacations where I’m lenient with my diet.
NCGS absolutely does exist and I think I am a typical example. I have had bloating and stomach cramps all my life (also migraines as an adult/cyclic vomiting in childhood). I had difficulties conceiving and asked to be tested for Coeliac because I thought it could be linked. I tested negative and was told not to alter my diet. Time went on, I had two sons and the GI symptoms got worse. Despite being pretty fit (I eat healthy and have run half marathons), I dressed in baggy clothes because of my ‘baby belly’ – constantly bloated but blamed it on being post-pregnancy. The morning dash to the toilet got earlier until I was waking at 5am and had to run to the bathroom. There would be more dashes through the morning. I started having painful haemorrhoids and bled a lot. If I ate a sandwich at lunchtime I had to undo my trousers for the afternoon. I missed a couple of days from work, doubled over with stomach pain and I had enough. A year ago, I stopped eating gluten. My pre-pregnancy shape returned within days (called for a whole new wardrobe!), and the other embarrassing symptoms have gone. For the first time in my life I wake without knots in my bowels and I get up in my own time. (BTW – I am curious to see the mention of Austistic Spectrum disorders in this article as this applies to me too).
Alright, I’m going to throw my 2 cents here! I am from KSA and I’d lived 5 years in the US to complete my Bachelor’s! 5 years in the US were hell as I had many health problems ranging from headaches to digestive issues. I came across Gluten sensitivity as I explored my issues online thoroughly when I was there but ignored it due to my studies. Two days ago I said I would give GF diet a try that include zero bread, cakes or anything that I suspected had gluten! What a surprise!! After two days most of my issues DISAPPEARED! No headaches, no gastritis, no gas trapped in stomach, no irritability in the morning. I am the old me! I am starting to write a small book about my experience because here in the SA, there is not a much of awareness about Gluten sensitivity. BTW, I couldn’t take a biopsy test because I have no insurance and so I am going through self-diagnose. All in all, it wouldn’t hurt to give this a try and I will continue my diet and record my observation along the way. I feel sorry for most of the gastroenterologists who don’t include this issue in their diagnosis but I think that newly graduated doctors will improve.
Sorry about the long message but hopefully it reaches listening ears.
My partner is NCGS is sip spect but we do not call it this.. One small amount of gluten or lactos gets into her diet and she is bed bound with stomach cramps and generally feeling ran down for a day. Is there anything she can take to stop the cramps and run down I’ll feeling if she does mistakenly eat some gluten or lactose. She has been tested do CD and it came back negative. Any ideas
Try activated charcoal tablets to ease the symptoms after being Glutened.
Yes, activated charcoal and I would also drink lots of water with lots of vitamin C (I like Alive! whole food C powder) and lemon essential oil. It helps me any time I feel like I’m reacting to something.
Yes! There is help for this. Above all, she should avoid all gluten (wheat ,rye, barley [which includes malt} and dairy and any derivatives thereof. Cross-contamination is a very real problem. It happens everywhere, even when we are explicit in trying to explain how the food should be prepared in any restaurant. It can happen because of cooking surfaces and utensils. Even the minutest residue in the tiny scratches on metal cook surfaces can hold (and administer) gluten. The wonderful thing of our time now is that there are enzymes that one can take before eating out. Look in a health food store for capsules which contain several enzymes for the purpose of gluten cross-contamination. It would actually be a good idea for your friend to take it at every meal for a while because of recent or repeated contaminations.
Hi Amanda,
The enzymes you’re talking about like Gluten Cutter only work for people diagnosed with Celiac, not Gluten Intolerance. I have gluten intolerance, gastritis, hiatal hernia and a few other things that I don’t remember at the moment. Anyway, I was taking Gluten Cutter and it wasn’t working, so I tried something similar from Swanson’s Vitamins. I talked to my gastroenterologist and he said those won’t work for gluten intolerant people because it isn’t a protein (I think) that has to be blocked.
(I have sleep issues and it’s after 4 am and I’m about to head to bed, so please excuse me if I put the wrong term.)
My best friend has Celiac and Gluten Cutter works for her. Other brands did not. Gluten cutting pills do not work for everyone with Celiac as her research showed, but she was willing to try it and it happened to work for her.
She feels bad for me that I can’t use it and that research is targeted for Celiac and not for gluten intolerance.
I am going back to vegetarian but will also try to add some vegan as well. Some paleo might work but not the meat since it seems to be too hard to digest.
Hugs and prayers of healing to everyone Celiac and gluten intolerant.
I have all the symptoms of Celiac and my doctor said my treatment would be the same if I had been diagnosed with CD.
Hi Tambra,
So sorry you are having trouble sleeping. I find it very curious that a GI doc would say that about gluten “cutting” enzymes when we were all given them by our functional doctors for, not only the cross contamination outside the home, but it was used in greater quantities during the elimination diet in the beginning to heal our guts and get the gluten out. It is called Gluten Flam and it really works. None of our family has cd but we are all gluten intolerant. I still feel that funtional docs are generally more knowledgeable than GI docs unless your gastro doc has actually been reading the research and actually works with gluten intolerance/celiac disease.
The other thing is that we (NCGI & CD people) should NOT be eating out much at all. Any contamination is BAD.
Also, if you can’t digest meat well (and I am the same) take HCL at the same time as you are eating. –and only eat organic meats.
I was diagnosed with coeliac disease about 10yrs ago via a intestinal biopsy. I continued and still do drink beer. I recieved negative coeliac blood tests for a number of years after until the cost to the practice said they would no longer do it. I am still mystified as to why I have no symptoms following beer consumption although I avoid gluten everywhere else. Maybe I dont have it. Any thoughts, also my annual blood tests show everything to be fine?
My daughter was diagnosed with Celiac five years ago. I was tested at the same time and did not have celiac. I ended up going GF because we wanted to keep a GF house for my daughter. This past week I drank tea that ended up having gluten in it, and for six days, I took a vitamin that had gluten in it(didn’t read the label well). I had horrible skin and GI symptoms. I’m wondering if this is enough gluten to trigger Celiac? I know that any tests that I take now will not give me any results, so I’m not sure how to proceed.
Its possible to have celiac run in your family and gluten intolerance separately. Many people (such as myself) do not find out of gluten intolerance until going off gluten and then going back on (long story short I was in extreme stomach pain and had dirreah after just three days). However, anything can trigger celiac—I have a friend who cannot have people who have touched gluten touch her food. If you are a celiac this definitely would have triggered it.
I’ve been battling this gluten wheat thing for years. I’m really sick and tired of people telling me I’m crazy. I did the biopsy and the doctor told me I was def not celiac and I’ve been told by more than one doctor my issue is mental illness. Now another doctor lead me to do a blood test. I am lactos intolerant 100% and coffee does irritate me. It’s really tough to not eat gluten when my boyfriend orders a pizza so once and a while I’ll eat a slice or two and then feel dizzy and rotten. Gluten is addicting but I feel way better without it in my life. I would just like some answers so I can move on with my life because I don’t want to have to worry about causing harm in my body because of wheat. This is so annoying I never thought eating could be so annoying. I love food 🙁
the biopsy is the gold std but sampling error can occur.
To rule out Celiac you need to check the HLA DQ2, and 8 genes. Questdiagnostics is one lab that offers it.
https://www.questdiagnostics.com/testcenter/testguide.action%3Fdc%3DTS_HLA_Celiac
If you’re not celiac the other 2 possibilities would be wheat allergy or NCGS
1. have you done any wheat allergy testing
2. NCGS is a dx of exclusion. neg gene testing. neg ab testing. neg bx. no villous atrophy
Yes, get the gene test. My functional medicine doctor (Peter Osborne) doesn’t use the Cyrex Lab test. He only uses the gene test. I had 2 copies of HLADQ-1 which is associated with NCGS. 2 and 8 are associated with Celiac. Also, he says true gluten free excludes other forms of gluten that are in ALL grains. I get a more noticeable reaction from rice, oats, and corn. You can order the test from his website and then know for sure. If you have one of the genes then you have to be grain free the rest of your life and work on healing the gut and correcting nutritional deficiencies grains have caused. It has really helped my family to know that it is genetic. Now I know all of my kids have it (that explains a lot). My husband isn’t so annoyed with restricting my kids’ diets. Relatives don’t think I’m so ridiculous. Yay!
Don’t do it!! Don’t eat your boyfriends pizza –ever! If He’s ordering, you’ve got to make your own or make something else you love to eat. I love food, too, but your (and mine, too) non-celiac gluten intolerance can still lead you straight to autoimmune disease! You have GOT to decide to be healthy and swear off ALL gluten forever. Probably not lactose, but casein –coffee in a cross reactor as well, so do not eat or drink anything with casein (all milk protein) or coffee. You need to look out for number one!! You are not crazy.
Just posted and its gone
I was diagnosed with coeliac disease about 10yrs ago via a intestinal biopsy. I continued and still do drink beer. I recieved negative coeliac blood tests for a number of years after until the cost to the practice said they would no longer do it. I am still mystified as to why I have no symptoms following beer consumption although I avoid gluten everywhere else. Maybe I dont have it. Any thoughts, also my annual blood tests show everything to be fine?
This is the most fascinating read!
I am also self diagnosed from a process of elimination over the past four years, after suddenly realising my diet held the key to many years of depression, unexplainable mood swings, nerves, off the scale panic attacks & paranoia. There wasn’t a doctor interested in my findings but always there waving the anti depression prescription at me! I refused to take the tablets which frustrated the medics. A CD blood test and camera did not result in a positive result but I had already stopped the gluten and could only manage a small amount each day for a couple of weeks before the test.
Removing every trace of gluten and almost all dairy has changed my life, ( until I unknowingly eat something I shouldn’t). The accidental hit is concentrated and really quite scary to deal with for several days.
Physically my joint pains, which were painful and as stiff as a board, the hives, stomach pain and more have totally disappeared.
The only time I question my self diagnosis is when I’m in de-tox from an unexpected dose of gluten, basically when I’m in a bad place as nothing is ever right. Every other day I am truly thankful that I took the time to understand my body and its needs. I absolutely knew that there must be a reason why my mind and body were making me feel so bad.
This really gives me hope that one day this will be out there for many others suffering unnecessarily to investigate, particularly my gorgeous son who displays ADHD/Autistic traits and won’t entertain changing his diet since my discovery. I know his life could be so different and I know he knows his life could be different too. He has taken it in and I hope once he is through his already difficult teenage years, he can start living a more settled, happy life .. much earlier than I did.
Hi
I had the same discovery of non-celiac gluten sensitivity NCGS
despite of suffering 8 years with intestine biopsy negative. I did test for NCGS at Cyrex Labs.which came positive. Now I am on free gluten diet since 2015. All symptoms disappeared but diarrhea still remain and still underweight . I also made stool test that find every thing normal except high yeast 4+ before
3 years but my doctor told me that is ?not any effect ,is that true? ?. Now I am starting to avoid sugar and starch like fruits
table sugar , potatoes, and rice .
MY QUESTION IS : Did your symptoms disappeared now and in your opinion expect my weight and diarrhea change?
Thank you and others for reading my case.
9 beside
my gluten free diet
Are you GRAIN free. I remember reading about a study showing that people who were gluten sensitive reacted more to corn than wheat. It is also very important to treat the yeast though!
I have had digestive problems for years now but very recently they had ten-folded, including chronic diahrrea, cramping, bloating, gas, etc, that was lasting over a 2 week period. I had been diagnosed in the past with IBS but never had a “flair up” that lasted this long. Knowing 3 people close to me who have been confirmed with CD I was educated enough to start suspecting gluten as the culprit and was encouraged by these people to look into it.
Instead of immediately getting the blood test as originally advised (which I highly regret now) I began to eat a completely gluten free diet and started to do some research on my own. I found that I had other symptoms that may have pointed to a gluten intolerance or CD all along, such as mood changes and unexplainable joint pain all over the body. I spent about 2 1/2 weeks gluten free and began to start feeling like a human being again. But, as many people have experienced here I became increasingly chastised and looked upon almost as if I was either being a ridiculous brat/fad follower or was having a psychosomatic reaction to being gf. Many people said things like “you’re self diagnosing”, or “gluten-intolerance isn’t a real, I’ve looked it up”. I was completely taken aback by the ignorance. Technically, I was self diagnosing, however how can you argue the hard evidence of the symptoms? I would look at these people straight in the eye and say “I’d kill to eat a hoagie right now or a pastry from some of the best bakeries, but you’re right, I’m totally making this all up”. But there was still that part of me that still wanted a more diffinitive answer. After my 2 1/2 weeks of gf, I reintroduced Gluten to my diet. Initially no symptoms (I’m talking within the first few hours following the consumption). I was thrilled. Maybe it wasn’t gluten after all. But then, literally that very evening, the symptoms returned with a vengeance. Terrible gi pain and diahrrea. This is where I’m at currently, struggling to decide if I want to continue eating gluten with all these issues so I could get properly tested, or return to my gf diet so I can feel normal again! Any suggestions or personal experience would be greatly appreciated!
Shannon you do not need the approval of other people for choices you make in your life. It is up to you, of course, but I don’t think you need to put yourself through the suffering just for the sake of others. Who knows your body better than yourself. We all should listen to our bodies far more than we do. You feel so much better when you avoid gluten. That is all you need to know. I have had the blood test, which I now know is not very accurate. It told me that I am not sensitive to gluten but when I avoid it I no longer have the bloating and pain. You don’t owe anyone an explanation nor do you need to provide them with a test result. You are the only one responsible for your health and body and the only one who knows best about what is good for it and what is not.