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Non-celiac Gluten Sensitivity: Fact or Fiction?

Celiac.com 02/28/2013 - An entry in the Patient Journey section of the British Medical Journal highlights the confusion around non-celiac gluten sensitivity (doi:10.1136/bmj.e7982).

Photo: CC--PerterJr1961In the entry, a person without celiac disease describes how, after years of unexplained health problems, a chance conversation on an internet forum led him to try a gluten-exclusion diet.

He claims he saw dramatic results: “Within a week of excluding gluten and lactose from my diet, all my symptoms had dramatically improved in just the same way as when I previously starved myself.”

After accidentally eating gluten the symptoms returned “within hours.” Such dramatic relief of symptoms led him to seek out what he calls “proper diagnosis.”

This, in turn, led him to Kamran Rostami, whose account of the condition supplements the patient’s story. Rostami says that the patient, like others had "negative immunoallergy tests to wheat and negative coeliac serology; normal endoscopy and biopsy; symptoms that can overlap with coeliac disease, irritable bowel syndrome, and wheat allergy.” Symptoms resolved on a gluten-free diet. Since there are no biomarkers, gluten sensitivity is the ultimate diagnosis of exclusion.

However, these facts, along with the lack of a disease mechanism have left some clinicians unconvinced.

Some, like Luca Elli are calling for aspects of gluten sensitivity clarified before doctors start “treating” people for this new “disease” (doi:10.1136/bmj.e7360).

Elli asks some logical questions, such as "Is gluten sensitivity different from irritable bowel syndrome, or is it simply a variant that benefits from a common therapeutic approach?"

To get an answer, many clinicians are looking to published literature (doi:10.1136/bmj.e7907). For example, a few randomized trials suggest that non-celiac gluten-sensitivity is a real condition, affecting 6% of nearly 6000 people tested in a Maryland clinic.

A multi-center trial is currently recruiting people without celiac disease, but with gluten sensitivity for a challenge with gluten or placebo.

Meanwhile, clinicians are advising that patients who have had celiac disease excluded through blood tests and duodenal biopsy be told that they may suffer from a newly recognized clinical condition which is not yet fully understood.

In related news, a letter published this week by David Unsworth and colleagues describes an “explosion of requests” for serological testing since 2007, particularly from primary care physicians (doi:10.1136/bmj.e8120). They note that NICE guidance in 2009 has done little to reduce the requests.

They also point out that, as the number of people being tested has risen, the rates of confirmed celiac disease has fallen to just over 1%, which is no better than rates achieved by random screening.

They call for more targeted testing, limited to groups in whom detection rates are highest: children with failure to thrive, family history, or type 1 diabetes, and adults attending diabetes and gastroenterology clinics.

However, such advice would seem to ignore cases like those described in the Patient Journey, cases where people with negative blood tests and biopsies benefit from a gluten-free diet.

What do you think? Is non-celiac gluten-sensitivity a real condition? Do you or anyone you know come up negative on blood tests and biopsies, but suffer from gluten-sensitivity? How should doctors proceed? Share your comments below.

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40 Responses:

 
Cait
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said this on
28 Feb 2013 4:32:00 AM PST
I think we should stop calling it a disease and start calling it what it is. America is the biggest producer of wheat which makes it both understandable and affordable for wheat and gluten to be in food, but human bodies aren't meant to eat mass quantities of anything and wheat isn't all that great for you in the first place. I was fortunate enough to finally test positive and get a diagnosis. At first I was angry and I thought how bad is this going to suck, but I got so sick and for so long I thought why not. Its been a year and not only do I have more money in my pocket but my whole life is healthier and just by eating naturally. I think eating so much wheat and gluten and junk growing up just finally took its toll on my body. Maybe I can't tolerate it. Maybe others can eat it sometimes or they can't at other times or whatever. But when are we just going to come out and say that we really just shouldn't be eating any of it in the first place? At this point, it's only a disease and disability because the modern world has pumped us full of this crud for so long that we can't take it anymore, yet they make it so that's the only thing immediately available. Its poisoning our people. I think its time for change all around. Change your life and perspectives.

 
Judith
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said this on
28 Feb 2013 5:07:20 AM PST
All of a sudden, at the age of 50, I started to have very serious reactions to things I was eating. They were always following the same scenario, with the bottom line being: I could not keep food in. After some testing and some more testing I was declared healthy and "would find out what not to eat". I had lost more than 40 pounds in 3 years and was afraid to go anywhere, or eat anything. A move to a different state and an alternative way of looking at my "non-problems" health situation suggested that I had a severe intolerance to gluten. I am following a strict gluten-free diet and am happy to report that doing so has eliminated all of my problems. I get occasionally glutened when I eat out and know it within 30 minutes. It is the same old scenario. So, for me, I know that I have a real condition. I would like doctors to take this condition seriously.

 
Diane W
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said this on
04 Mar 2013 3:49:39 AM PST
My experience exactly!

 
Blake
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said this on
06 May 2013 8:37:58 PM PST
How did you feel when you were sick? What were your symptoms?

 
Sophia Fletcher
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said this on
28 Feb 2013 5:26:29 AM PST
I believe that it is happening to some people. I did endoscopy and colonoscopy which did not conclusively detect celiac disease. But whenever I ingest gluten by mistake my symptoms return. All along doctors told me I had IBS. I don't understand it at all. I cannot say I was diagnosed with celiac disease, but eating gluten makes me really sick. I have been gluten-free for about 4 years now.

 
Linda Segall
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said this on
28 Feb 2013 7:44:20 AM PST
Non-celiac gluten sensitivity is a fact. Please read The Gluten Connection (Rodale 2007) by nutritionist Shari Lieberman PhD, with Linda Segall. This condition can be tested with a stool test at EnteroLab (enterolab.com) in Dallas. It is estimated that up to 29% of all people have this condition!

 
Elizabeth Ceman
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said this on
28 Feb 2013 10:39:26 AM PST
Should there be new tests? Since the wheat has itself been changed? Very simple and logical question, yes?

 
Astra
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said this on
04 Mar 2013 6:31:05 AM PST
My tests, genetic testing and biopsy were negative and I was told I possibly could not have celiac disease. I had dermatitis similar to herpes rash which went away on the gluten-free diet. My father is gluten sensitive, and my father's mother's sister died of celiac disease. I am extremely sensitive. 7 years on gluten-free diet. I think scientific community have not found all the right genetic markers yet.

 
Barbie M
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said this on
08 Mar 2013 8:34:46 PM PST
When the drug makers find a way to make money on the gluten intolerant, you will see a miraculous turnaround in how the medical community is then given a reason to accept gluten intolerance as a real diagnosis. I was told, and I quote, "I cannot accept your condition as celiac if you have not been diagnosed by a colleague." Back then the testing was grossly inadequate. The drop in blood pressure, the disappearance of arthritis, the ability to keep food down, the elimination of rashes and hives, the lack of muscle cramping and restless leg syndrome, the bloating, gas and cramps, etc. None of it had any bearing or consideration with this doctor. I eliminated him as my physician and have only been sick enough to require a doctor twice in 7 years. I do not exaggerate. Thank you.

 
R.
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said this on
04 Mar 2013 8:17:07 AM PST
A research study that I have seen indicates that approximately 30% of the population carries the gene for celiac disease, and approximately 1% of the population has Celiac Disease. It seems very possible that some with the gene, but not with verifiable celiac disease may have some degree of gluten sensitivity. I wonder if there is any research showing how many of those with "just gluten sensitivity" have tested positive for having the gene for celiac disease. (The last time I checked, the cost of the genetic testing was about $800.00.)
The fact that our wheat now has more gluten, and extra gluten is added to some food products, probably has boosted the number of people with symptoms of gluten sensitivity.

 
michelle
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said this on
04 Mar 2013 10:00:09 AM PST
I have seen with my own eyes, in my own child, that it is true to have gluten sensitivity without celiac disease. My firstborn has celiac disease. When my second born started exhibiting similar symptoms, I took him for celiac blood tests - negative. Many of them negative. He experimented with dairy-free diet, taking pro-biotics, duodenal biopsy also was negative and looked 100% healthy. He felt horrible for years. Then, one year for Lent he "gave up gluten to understand and support" his celiac brother. Guess what - he's been gluten-free and feeling better ever since. We even have really good celiac GI docs at the University of Chicago and still... this is what it took to figure it out. Hopefully a marker will be discovered.

 
Montie
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said this on
04 Mar 2013 11:57:47 AM PST
I too tested negative for celiac disease after an endoscopic biopsy. I had resolution of my symptoms (GI upset, mental fogginess, general feeling of malaise, abdominal bloating, etc.) within a week of eliminating gluten from my diet. If I do ingest gluten, I am feeling the effects by the following day. This condition is real and I feel that doctors should at least explain the possibility to patients with these symptoms and then the patient can choose whether or not to follow a gluten-free lifestyle. It is difficult at times, but I will never go back to feeling so bad!

 
L Carter
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said this on
04 Mar 2013 1:01:26 PM PST
I am one of those who tested negative on the serology test, endoscopies + biopsies, and the gene test... but wheat definitely bothers me. I am dairy-free and gluten-free and hereditary fructose intolerant. It may be the fructans (a wheat starch made up of long fructose chains) which is really the culprit. I am wondering if others who are non-celiac gluten intolerant really have fructose malabsorption (which is surprisingly common) or have HFI (which is rarer) like me? Anyway, it's an interesting possibility.

 
Desiree
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said this on
04 Mar 2013 4:13:57 PM PST
I don't see why this can't be considered a condition when lactose intolerance and irritable bowel syndrome are accepted. Those, along with gluten intolerance, are not detected by tests or concrete evidence, but by symptoms reported by the patient and through trying out different diets and/or medicines that don't cure, but alleviate symptoms. I agree with Cait in that America puts too much wheat in the diet, and I think that cow's milk is the same issue. Anyway, I was diagnosed with gluten intolerance, and I feel better when I don't eat gluten. I feel bloated, tired, and in pain when I do. So I don't. What does it really matter if doctors want to call it a disease or not? If you feel better eliminating a particular type of food from your diet, then do it.

 
joyce cuccia
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said this on
04 Mar 2013 4:26:27 PM PST
2 years ago I did a stool test through Enterolab. The results were borderline sensitive, I would say. But I stopped eating gluten and my hot flashes went away, as did joint pain and stomach pain with diarrhea. I cannot eat anything with gluten, and if I accidentally get glutened, I get very sick now. After I took a round of antibiotics, it has taken over a month to recover from gluten symptoms and reaction. I have no one but me and the Internet to learn what is going on. Doctors in my state of Colorado are clueless. Research papers and this website have helped so much.

 
GG
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said this on
30 Apr 2013 7:29:00 PM PST
I am a doctor in Aurora and have studied gluten sensitivity for years.
It is real and one of the causes of "leaky gut". Leaky gut may predispose to gluten sensitivity and vice versa.

We are doing a story this month on Channel 31 Denver re: gluten

Best wishes for a healthy life.

 
Louise
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said this on
04 Mar 2013 4:31:58 PM PST
My experience is the same as Cait's and Judith's. I won't go near the stuff with a 10' pole (knowingly). I too know within 30 minutes if not sooner if I've been glutened. There's no way I would go back on it for a study!

 
Katie
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said this on
04 Mar 2013 4:43:07 PM PST
I have one daughter who tested negative for celiac on the blood test but positive for celiac on the biopsy. My other daughter tested negative to celiac on the blood test and biopsy, but all symptoms disappear with a gluten-free diet. Of course non-celiac gluten intolerance is real. It could be because the wheat we now have is not the wheat of yester-year. It is now genetically modified and therefore not compatible with many people's digestive system. Seems logical to me; I don't understand the doubt and debate.

 
Ann Mitchell
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said this on
04 Mar 2013 4:57:09 PM PST
I am gluten-sensitive and do not have celiac disease.
My gastro doctor said (many years ago) I should just eat like I have celiac disease. So I do. I get immediate nausea if I eat something with gluten in it. I am also on digestive enzymes which help a lot.

 
Elizabeth
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said this on
04 Mar 2013 5:49:03 PM PST
I have a biological celiac daughter and celiac on my husband's side. My own TTG was negative. Since going gluten-free (over one year ago) my GI symptoms have disappeared, my skin has improved and my temperature regulation has greatly improved. Mostly, I believe I am now processing fat correctly. My cholesterol levels are now good, so my doctor has taken me completely off simvastatin. My thyroid levels are improved and may soon require a reduction in my meds for Hashimoto's thyroiditis.

 
Melissa
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said this on
04 Mar 2013 6:07:14 PM PST
Non-celiac gluten sensitivity is real or we just don't know how to test properly for celiac disease. Either that or I continue to be a medical mystery and would like to know what caused the permanent neurological damage that was a result of Vitamin E deficiency. And the wicked hives that I get when I get glutened. Or why all my digestive system symptoms and problems went away after 2 weeks of going gluten-free. I am truly tired of being called a medical mystery. Let's call it what it really is: we don't understand celiac disease or how to test for it properly.

 
ScottR13

said this on
04 Mar 2013 7:17:22 PM PST
I have "Gluten Sensitivity." I also had my whole family tested and they also have "Gluten Sensitivity." This condition affects a lot more people then anybody realizes. There also are blood tests already for this, however, it seems like very few of us know about them (I work in a lab and I'm also a Wellness Coach). When the true number of people with "G.S" is known, that number will be staggering.

 
Chris

said this on
05 Mar 2013 4:11:13 AM PST
I had suffered from GI distress from age 18 to age 58. At one point it was so bad I could not straighten up due to the pain; I looked like a skeleton with skin, knew the location of every clean restroom in town and used many restrooms no sane person would enter. At age 30 I was diagnosed with Crohn's disease, no mention of celiac disease, and I was put on a bland diet. There was no improvement in my condition. At age 58, a genetic profile indicated that I was unlikely to suffer from Crohn's, but highly likely to suffer from celiac disease. I went on a gluten-free diet. Within a week, my symptoms began to vanish. Within a month, I was symptom-free. THEN I unknowingly ate at a restaurant that served nothing whatsoever that is gluten-free. Within two hours, my symptoms all returned. Several other 'incidental' exposures to gluten have had the same effect. But, since I started the gluten-free diet prior to having antibody testing, the tests came out negative. I have maintained the gluten-free diet for 3 years now and my GI doctor declared after a colonoscopy that he could find no evidence of either Crohn's or celiac disease. Call it what you will, I am highly sensitive to gluten and have no test results to confirm celiac disease or Crohn's.

 
Susan
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said this on
05 Mar 2013 7:40:01 AM PST
Non-celiac gluten sensitivity is very real. My mother has been diagnosed with celiac disease so my daughter and I were tested. Both of us tested negative for celiac disease, however, both of us have sensitivity to gluten. We both have DH during what we call "Gluten Bouts." We also experience the bloating and intestinal distresses. Gluten sensitivity is very, very real.

 
Gill
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said this on
05 Mar 2013 8:07:29 AM PST
Completely in agreement with 'Cait' above; at age 64 after three months of intestinal problems and after checking symptoms on the Internet, I decided to do a gluten-free trial. The results were so dramatic, it was like magic. Almost all my symptoms disappeared within three days, and the rest (dermatitis etc.) are also improving bit by bit. This was almost a year ago and I feel so much healthier and happier that I never intend to eat gluten again. I am undiagnosed simply because I had been gluten-free for three months before testing, so of course it came back negative, the only way for me to find out is to start eating gluten again and get tested but this would be unpleasant and a complete waste of time just to get a written diagnosis which is of no use to me whatsoever. Since four years ago I also suffer with Hashimoto's thyroid condition, for which apparently going gluten-free is recommended, though my endocrine specialist never mentioned this to me!

 
K Hall
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said this on
05 Mar 2013 8:09:41 AM PST
I know that this is a very real condition and am still struggling to find a doctorwho will take me seriously.
I developed a severe reaction to gluten a few years ago but came up negative on blood and biopsy tests (likely because they were run far too late), however if I get even the slightest cross-contamination, I'm left trying to recover over a period of 4-6 months. Yes, months, not weeks like most 'normal' celiacs. I've been gluten-free and trying to heal for the last year and a half but can still can barely eat the few whole foods I have on my short menu. I understand that some celiacs never truly get under control even with the gluten-free diet, and perhaps this is me. This can't be normal -- I'd like to get a genetic test but my doctor still tells me I have IBS. I am looking for a second opinion now. While IBS is certainly possible, I don't believe it's the whole story. I am hoping more research is done on this subject.

 
Shirley Braden

said this on
06 Mar 2013 10:15:18 AM PST
I'm not sure why a site whose very publication is titled Journal of Gluten Sensitivity would be asking this question. Was your publication renamed to that name just to get more non-celiac readers, not because you, in fact, did believe that gluten sensitivity is real? Your publication certainly has many, many articles about non-celiac gluten sensitivity. It's disappointing to see the reality of gluten sensitivity questioned here. It makes me wonder if this article is yet another one that has a title and subject just to stir folks up and attract attention.

 
Gryphon
( Author)
said this on
06 Mar 2013 10:41:56 AM PST
Evidence would suggest that non-celiac gluten sensitivity is real (and we would agree that it is) but believe it or not, it's still a point of debate in scientific circles.

 
Shirley Braden

said this on
06 Mar 2013 1:38:59 PM PST
Gryphon--Thank you for replying as a spokesperson for celiac.com. I'm certainly glad that your organization does believe that gluten sensitivity is real. I just wish this article had not been written in such a way that the reality of gluten sensitivity is still questionable. I, and others who do not have a celiac diagnosis, are disturbed when we see articles that appear to give credence to gluten sensitivity not being real. Most of us have been down long and difficult paths to be gluten free and finally recovering from our symptoms and we're ready to be accepted/acknowledged/supported by the medical and gluten-free community. We want more of yes, gluten sensitivity is real and here's why vs a further "muddying of the waters" as I see this article doing. I can see showing that there are dissenting viewpoints among the members of the medical community still, but not necessarily presenting them as "legitimate" per se. In addition to Dr. Fasano's and others' studies cited on gluten sensitivity, even back in the 2008/2009 issue of Living Without, Dr. Stefano Guandilini (University of Chicago Celiac Disease Center and North American Society for the Study of Celiac Disease) stated that "There’s a lot of research going on in this area, including in our lab at the University of Chicago Celiac Disease Center. The data is preliminary but suffice it to say that research is now revealing that changes do occur in the intestines of gluten-sensitive patients when they ingest gluten. More will be uncovered about this in the future." My point is that there has been some acknowledgment of the reality of non-celiac gluten sensitivity from the experts for some time, whether or not the entire medical community--the same community that is doing such a poor job of diagnosing the much more "accepted" celiac disease, I might add--accepts it as fact (celiac.com's wording).

 
Karen
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said this on
06 Mar 2013 11:19:35 AM PST
I believe it exists. My son is a prime example. He was diagnosed very young with ADHD. After talking to a friend I had allergy testing done on him. He reacted to 29 different foods! We took them all out of his diet. All his ADHD symptoms completely disappeared.He was suddenly the typical 5 year old boy. After about a year, we started slowly adding things back in, one at a time. 5 years later, the only things we can not add back in are Gluten, Casein and Soy. As soon as he ingests any of those 3, all the ADHD symptoms come back, the tantrums and meltdowns, the inability to sit still or concentrate, the horrendous and painful gas issues and the "Allergy Shiners" and headaches.

 
Shirley Braden

said this on
06 Mar 2013 1:43:37 PM PST
Clarification--That was the Aug/Sept 2009 issue of Living Without (the Q&A with Dr. Guandalini section) from which I extracted Dr. Guandalini's quote.

 
Shannon

said this on
06 Mar 2013 1:52:23 PM PST
Dr. Fasano proved that non-celiac gluten sensitivity existed. Why are you suggesting it doesn't? There isn't a question.

 
Jennifer
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said this on
11 Mar 2013 2:37:49 PM PST
It is incorrect to say there is no bio-marker. The doctors just haven't found the bio-marker yet. A strep test would show negative for celiac, and that would not disprove the existence of celiac. It just shows the strep test is the wrong test for celiac disease. I think the doctors make the mistake of applying only the celiac tests- and then when those come back negative in some people reacting to gluten, they then say non-celiac gluten sensitivity is a non-entity. The logic is fatally flawed. Yes we know the regular allergy and celiac tests don't pick it up. But come over to my house and you will see the evidence (my two children, one celiac, one non-celiac gluten sensitive, both have explosive diarrhea when they ingest even small amounts of gluten -- and NOT when their food is gluten-free). Why not base a test on that? I'm sure there are other potential bio-markers being missed as well.

 
Ruth

said this on
02 Apr 2013 4:47:24 AM PST
I had exactly the same experience: diagnosed as a non celiac, however while waiting for the results of the test I tried a gluten-free diet and had tangible results within 2 weeks. I believe that there is something wrong with the testing.

 
Wanda
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said this on
26 May 2013 7:55:20 AM PST
Lots of great information here. I have had an odd problem with certain breads but not all. When I eat flour tortillas, certain English muffins, certain bagels, I get immediate stomach pain that lasts for about an hour. Anyone else with similar experience? I avoid those foods.

 
kathryn
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said this on
04 Jun 2013 8:42:08 AM PST
I have a 2.5 year old son with profuse diarrhea for 6 months, DQ8 positive, selective IgA deficiency, and drop in weight from 50th to 5th percentile with the diarrhea. He complained day and night of "tummy sick mummy." His twin sister is fine and a solid 50th percentile across the board.

Visual endoscopy showed diffuse duodenal inflammation and edema, biopsies completely negative. Gluten-free diet has resolved all symptoms, he is happy, (everyone, even his music and art teacher have commented he is like a new little boy), and has gained 2 pounds in 2 weeks and is eating everything in sight.
I cringe at the thought of reintroducing gluten (or wheat associated fructans if that is indeed the problem) as we did a gluten reintroduction trial a few weeks ago with diarrhea and abdominal pain misery ensuing.

On one hand I think (and our family doctor does too) that I must be completely insane (no there is no family history of mental illness and I love my gluten as much as the next person and am not particularly loving the gluten-free options - and I am not seeking out attention by using my son's illness -in fact I delayed seeking medical attention for him for months out of fear I would be labelled one of those crazy mothers...) On the other hand, the objective improvement in abdominal pain and diarrhea are not subtle.
I should mention I am a physician (nephrologist) and the scientist in me is cringing that my mum-observations do not align with the pathology (or lack thereof). But I also recognize as a physician that many conditions we currently acknowledge were "figments of people's imaginations" 20 years ago. A recent randomized trial in the well respected Am J Gastroenterology appears to confirm the symptoms complex as a real entity, which is the only thing making me feel a little less crazy.

 
Tom Sweeney
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said this on
16 Jun 2013 3:38:33 AM PST
In answer to your question, I believe non-celiac gluten sensitivity is a real condition. I believe that gluten is the culprit in both celiac and non-celiac disease. Why some people get the actual disease and others get a lesser version (Non-celiac) is the mystery. Also I believe that gluten may be the cause of all autoimmune diseases. I say this because I have non-celiac gluten sensitivity since a young child (around 5 years old). I discover this after I was diagnosed with Ankylosing Spondylitis (AS) at the age of 66. After I had the AS diagnosis I began to read about the AS disease and found that celiac disease was linked to a lot of other autoimmune diseases.
My theory on the connection is that immune system gets confused when fighting off the gluten culprit and without success and creates other attacks of autoimmune disorders such as Lupus & RA. Could this be possible that gluten is a major cause of most of our health care cost and sickness of individuals in America?

 
Jean
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said this on
25 Sep 2013 1:41:09 AM PST
Have you have tried a gluten free diet for your AS and if so did it help? My partner has AS and I was wondering if a gluten free diet might help him (in addition to the vegan low fat diet that we are already on).

 
Jim Broome
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said this on
05 Aug 2013 6:17:19 AM PST
What I see here is a website dedicated to a particular condition, and then a clickbait question to get people who have already made their minds up that their condition exists to respond. There is no real information given here - it may be good journalism, but no-one should consider a small number of self-reporters with an axe to grind to be conclusive.

 
Kenneth Blake
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said this on
06 Aug 2013 7:27:06 PM PST
Patients who are diagnosed with non celiac gluten & wheat intolerance are still at risk for the same symptoms as patients who are diagnosed with celiac disease, so if you have reactions from the gluten-filled foods, then you should definitely follow a gluten-free diet.




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