Basic Question Regarding Evidence Of Benefit Of Gluten-free Diet

[benjamin]

I'm new at this, so please forgive my stupidity in advance for the following question. Is there any solid evidence demonstrating clinical benefits of a gluten-free diet for completely asymptomatic adult-diagnosed celiac disease patients? Have any long-term controlled studies been published in peer-reviewed scientific journals demonstrating reduced mortality or morbidity in such asymptomatic adult patients who adhere to the diet compared to those who do not?

[home-based-mom]

I'm new at this, so please forgive my stupidity in advance for the following question. Is there any solid evidence demonstrating clinical benefits of a gluten-free diet for completely asymptomatic adult-diagnosed celiac disease patients? Have any long-term controlled studies been published in peer-reviewed scientific journals demonstrating reduced mortality or morbidity in such asymptomatic adult patients who adhere to the diet compared to those who do not?

Why would anyone of any age who was completely asymptomatic be tested for celiac or anything else? I would think there would be no studies on such people because there would be no subjects to study? People who are completely asymptomatic don't tend to get tested for anything simply because they are completely asymptomatic.

Or am I missing something in your question?

[Mango04]

Why would anyone of any age who was completely asymptomatic be tested for celiac or anything else? I would think there would be no studies on such people because there would be no subjects to study? People who are completely asymptomatic don't tend to get tested for anything simply because they are completely asymptomatic.

Or am I missing something in your question?

There are quite a few asymptomatic celiacs. They get tested because their family members have the disease. I believe it's called silent celiac disease.

[kbtoyssni]

I don't have any studies to cite, but there was one done where they randomly tested a huge number of people, and they found that only 1 in 40 people with celiac had been diagnosed. So that's 39/40 of celiacs running around still eating gluten. And we all know the long-term consequences of a celiac eating gluten.

Silent celiac is a possibility, but I think most celiacs do have some symptoms that they don't realize until they go gluten-free. Like my eyes always itched and I used eye drops a lot. I never thought anything of it, but it went away when I went gluten-free.

[WW340]

Yes, there are a lot of asymptomatic celiacs. Unfortunately, they stand to suffer the same long term problems from the disease as symptomatic celiacs do, such as, lymphoma, intestinal cancers, vitamin deficiencies, osteoporosis, thyroid disease, etc.

The only difference is that the malabsorption is not great enough yet for the celiac to feel symptoms from it, but the damage is being done just the same. For a formal diagnosis, the villa of the intestines are already showing damage, the symptoms just have not yet begun.

I don't know how many studies are out there on the subject, but there are a lot of articles.

Here is one study:

Open Original Shared Link

Article Open Original Shared Link

Even after I was diagnosed with celiac disease, I didn't realize all the other problems I had until the doctor looked for them. Osteoporosis for one and other vitamin deficiencies.

[happygirl]

Welcome to the board, Ben.

Not as much is known about "silent Celiac" as compared to "symptomatic Celiac"---considering its often a struggle to get a very symptomatic Celiac diagnosed, even less is known about those without symptoms.

97% of those with Celiac don't know they have it. There is a lot known, but even more is unknown. Dr. Green says that for every 1 symptomatic person, there are 6 asymptomatic patients. He says "the long individuals have celiac disease, the more likely they are to get other autoimmune disorders" (p. 31, under "silent celiac disease")

Open Original Shared Link

However, all of the leading Celiac experts (Columbia University, Mayo Clinic, Univ of Chicago, Univ of MD, etc.) recommend a strict, gluten free diet because gluten still causes problems.

"Q: Is it ok if I ingest some gluten if I do not experience any symptoms?

No. The majority of patients with celiac disease experience no symptoms when they ingest gluten, either intentionally or unintentionally. This led to the concept that patients, especially children may grow out of the disease. In addition, patients also consider that it is doing no harm to them. However the ingestion of even small amounts of gluten results in damage to the small intestine--regardless of the presence or absence of symptoms--and puts the patient at risk for resulting complications including malignancies and osteoporosis. " Open Original Shared Link

[aikiducky]

Not really very long term, but I came across this study that I found interesting. They interviewed two kinds of celiacs, ones with symptoms, and ones without, one year after starting gluten free, and found that quality of life had improved for both groups. So if you're wondering about whether it's worth it, apart from all the scary scenarios, there's also a positive side to this. You might just find that you feel better gluten free.

Open Original Shared Link

"Our main finding is that after introduction of the gluten-free diet, most patients with symptom-detected disease and, interestingly, most patients with screen-detected celiac disease reported improved psychological well-being and gastrointestinal symptoms. During the diet, the well-being and gastrointestinal symptom scores of the screen-detected group (including both the truly asymptomatic and those with minor symptoms) improved, and their follow-up scores were actually better than those of the participants without celiac disease. These findings imply that before starting the diet, even the asymptomatic patients with celiac disease may have had mild symptoms, of which they became aware only after being prescribed a gluten-free diet. As expected, for patients with symptom-detected disease, psychological well-being and gastrointestinal symptoms improved during the diet, even more than for patients with screen-detected disease (achieving the level of the participants without celiac disease)."

Pauliina

[TestyTommy]

If you're looking for someone to tell you that it's okay to eat gluten if you have a positive antibody test but no symptoms, you're in the wrong place. Most of us weren't diagnosed until we had severe symptoms and our live were destroyed. If you're an asymptomatic celiac, quit eating gluten.

And consider yourself very lucky.

[psawyer]

Listen to happygirl. She speaks the truth. Gluten does harm to you if you have celiac disease, even if you do not have visible symptoms. Be grateful that you know about it; you can extend your life expectancy and avoid serious related diseases by adopting a completely gluten-free diet immediately.

[benjamin]

Why would anyone of any age who was completely asymptomatic be tested for celiac or anything else? I would think there would be no studies on such people because there would be no subjects to study? People who are completely asymptomatic don't tend to get tested for anything simply because they are completely asymptomatic.

Or am I missing something in your question?

Thank you all for taking the time to provide your thoughtful responses. In answer to hom_based_mom's question, I was tested because my daughter was recently diagnosed, and her doctor recommended testing the entire immediate family. Now I'm not so sure I should have run to do the test.

I appreciate that the nearly universal official recommendation of the medical community is to treat asymptomatic patients. My question was a request for evidence supporting this recommendation. You'll notice that the official recommendations are surprisingly short of footnotes.

The article cited by aikiducky is interesting, because it indicates that maybe "asymptomatic" patients aren't as asymptomatic as they think they are. The article, however, carefully avoided reaching any conclusions about long-term benefits of the diet. Even more interesting, the article acknowledged that "The extent to which patients with screen-detected (i.e., symptomless) disease benefit from dietary restriction is unknown." The article's contribution was an analysis of a small group of patients for a one-year period.

I've also noticed that there have been numerous attempts to demonstrate a statistical benefit to population-wide screening, and none has been successful. Although logic suggests that identifying and treating asymptomatic patients ought to be beneficial, this logic does not yet appear to be supported by any persuasive evidence. As the article cited by aikiducky points out, the treatment itself may have side effects that outweigh the benefit of the treatment, e.g., patients' considering themselves "sick," which may have a negative effect on their health in numerous ways that outweighs any benefit of the treatment.

I'm still interested in more references to controlled studies, i.e., studies in which one group followed the diet and the other did not, and the health of the two groups was compared after some number of years.

Thanks again for your input.

[ravenwoodglass]

If you google 'asymptomatic celiac' you will see how serious this is. Celiac is a spectrum disease effecting much more than just the gut. In googling you will find lots of articles related to the ill effects that 'silent' celiac causes. Celiac can attack the thyroid, brain, gallbladder, lymph system and much more. The choice whether to save and improve your life is yours. You have no way of knowing the many effects that it is having on you until you stop consuming. Or you could wait until you have dementia, or have your pancreas attacked and become diabetic, or until you develop something like fibro, or CFS or arthritis. Of course by then it may be too late to heal.

[benjamin]

Further to my earlier post, I posed my question to Prof. Maki, the author of the article cited by aikiducky. I've copied his answer below (start reading from the bottom of the exchange).

----- Original Message -----

From: Markku Maki

To: Benjamin

Sent: Monday, March 31, 2008 4:43 AM

Subject: Re: Benefit of treating asymptomatic adult celiiac patients

Yes, if you think I responded the the question asked, if it fits to the discussions. One could broaden this question and answer very much, start to philosopy. I also am aware and accept that there are opinions contrary to mine.

regards again

markku

At 20:19 31.3.2008, you wrote:

Dear Dr. M

[aikiducky]

It's only quite recently that the blood tests were developed that are used to screen silent celiacs. I assume that's the reason there aren't any long term studies yet. In 20-30 years we'll have much more information about how the silent celiacs that are being diagnosed nowadays are doing.

Pauliina

[ravenwoodglass]

One additional note, if you were screened through blood work and are producing antibodies there is a really strong chance that you are not really 'silent'. Those antibodies are already working against your organs if they were shown in the blood panel. Some of the damage can be so varied that is it hard to recognize as gluten related until the damage is severe and shows up as something like lymphoma.

As pointed out by another poster the study of celiac is in it's infancy, so to speak, especially in the US. It may be hard also to find studies on long term mis or un diagnosed celiacs who continued a gluten filled life and those who were lucky enough to be found simply because so many of the 'silent' ones are dead from related illnesses that are not recognized to be celiac related or newly recognized and/or noone ever thought to test them for it.

You may want to google 'noncompliant celiac and adverse effects' that should bring up some definative studies for you.

[AliB]

My Mum, who became Type 1 diabetic at the age of 16, was anemic all her life and had pregnancy and fertility problems (me, followed by a stillborn, then 10 miscarriages) - all diseases and problems that would be considered problems within their own right - was put on to a gluten-free diet by a doctor in the hospital where she spent the last few weeks of her life before dying of multiple organ failure at the age of 64.

I am now convinced that the doctor was on the right track - way, way too late though for the diet to have made any difference and have saved her life. I believe she had 'Silent Celiac' all her life, quietly and insidiously causing malabsorption issues that led to her health problems, but it was not really until a Consultant changed her insulin just 2 years before she died that the Celiac actually reared its ugly head. She reacted badly to the (completely unnecessary) change of insulin and I believe the resulting trauma was the trigger that kicked the Celiac out of hiding into displaying more obvious external symptoms (very gassy, bloating, frothy diarrhea, labrynthitis and TIA type reactions, etc., even the intermittent claudication in her legs that was attributable to the diabetes I believe may well have been to do with the Celiac and may well be the case with all other Type 1's) - the last two years of her life were a complete misery as one thing after another kept piling on top and her health deteriorated very rapidly.

Unfortunately, neither she, nor we, nor the Medical Profession realised what the symptoms were telling us at the time until it was all too late. She died before a diagnosis could be made, but I don't need one to tell me what killed her.

It is when Celiac is 'silent' that it is doing it worst - when people are totally unaware they have it - when the problems they are getting are not attributed to Celiac. You look at virtually any illness or disease in gluten consuming nations and you can jolly well guarantee that gluten/carb intolerance will be behind them, whether Celiac or not. Sooner or later it will come out of hiding and it may well, for some be far too late. There needs to be a heck of a lot more education on this, both for the Medical Profession and the public.

When it is asymptomatic or 'Silent', it is deadly.

[TestyTommy]

Keep in mind that there is very little research on celiac disease. Medical research (esp in the US) is done for diseases for which companies can develop profitable treatments. For celiac, there is a 100% effective treatment which has zero side-effects, so there are never going to be the sort of large-scale studies that you're looking for.

If you think celiac is trivial, take some time reading the threads in these forums to see the sort of suffering it causes.

[Lizz7711]

Unfortunately, neither she, nor we, nor the Medical Profession realised what the symptoms were telling us at the time until it was all too late. She died before a diagnosis could be made, but I don't need one to tell me what killed her.

It is when Celiac is 'silent' that it is doing it worst - when people are totally unaware they have it - when the problems they are getting are not attributed to Celiac. You look at virtually any illness or disease in gluten consuming nations and you can jolly well guarantee that gluten/carb intolerance will be behind them, whether Celiac or not. Sooner or later it will come out of hiding and it may well, for some be far too late. There needs to be a heck of a lot more education on this, both for the Medical Profession and the public.

When it is asymptomatic or 'Silent', it is deadly.

I can give a similar story. I've just, at age 42, been diagnosed celiac and have DQ2 and DQ3 genes. I'm sure i've had it my whole life, now have hypothyroidism and adrenal fatigue. But as in your case, i'm convinced my mother died ultimately due to undiagnosed "silent" celiac disease (from where I got the celiac DQ2 gene). She was always very high energy, then in her 60's got diagnosed with severe spinal osteoporosis. Then around 69 she got hit with a diarrhea issue which led to her losing so much weight that she weighed 86 pounds and all MAYO clinic told her is that she had "ulcerative colitis" and gave her pepto bismol. She finally gained weight and was feeling better when she got diagnosed with adenocarcinoma of unknown origin (my guess is small intestine), and she died a very painful death 8 months later.

But, her death was not in vain...her suffering and death led me on a track of going to grad school in nutrition, and through various circumstances went to a seminar on gluten sensitivity, realized i needed to get my 8 year old tested, she was positive so I got tested....and now, thanks to my mom and her terrible sufferings...we have a chance at a better future hopefully without such health problems.

Cancer is often asymptomatic--until it's so bad that it's killing you. Tumors are only apparent after a couple years of growing. Furthermore, gluten affects too many organs and body systems, based on a person's genetic "weak " areas...so i'm sure doing such controlled randomised studies is next to impossible, and as someone else said...the treatment is free so there is no pharmaceutical interest in such expensive studies (they're the ones with the money who usually fund such studies in hopes of profit through drug treatments).

So, up to you whether you prefer solid evidence before changing your lifestyle and would rather take the risk, than to trust in the hundreds of real people and their experiences, and by the grace of God, prevent such horrible later life issues for yourself. I understand you wanting to find evidence if it's there, but if it isn't...you're taking a big risk to ignore the evidence HERE.

Liz

[Lizz7711]

I'm new at this, so please forgive my stupidity in advance for the following question. Is there any solid evidence demonstrating clinical benefits of a gluten-free diet for completely asymptomatic adult-diagnosed celiac disease patients? Have any long-term controlled studies been published in peer-reviewed scientific journals demonstrating reduced mortality or morbidity in such asymptomatic adult patients who adhere to the diet compared to those who do not?

Don't think there is such as study as you're asking for at this time. Did find this though--

Following is the discussion section from an article taken from (bolding mine):

The Lancet, volume 358, Issue 9279, 4 August 2001, pages 356-361 "Mortality in patients with coeliac disease and their relatives: a cohort study"

Discussion

Our study on the mortality of coeliac disease was large with respect to the number of patients enrolled. Although the total number of patient-years at risk accumulated by our cohort (6444) was lower than that noted by Logan and colleagues3 (8823), this difference is unlikely to have affected the accuracy of our mortality estimates, because previous studies3 and 15 and our study agree that excess in mortality risk occurs mainly within the first years from diagnosis. Additionally, we have noted a relation between mortality and the pattern of clinical presentation, delay in diagnosis, and the degree of compliance with a gluten-free diet.

1072 adult patients with coeliac disease were consecutively diagnosed by 11 Italian gastroenterology units, in which researchers had similar diagnostic criteria for coeliac disease. This similarity was confirmed by the absence of significant differences for the variables shown in table 1. Because this study is not population-based, our design might have generated a selection bias. However, this possibility seems unlikely because the observed distribution of the clinical pattern of coeliac disease at presentation and of demographic factors did not differ from those reported by a large Italian multicentre survey.16 Furthermore, compared with the unique population-based investigation,3 we reported a lower mortality rate (8

[benjamin]

Thank you again for all of your input.

I've been convinced of the wisdom of the gluten-free diet, even for an asymptomatic adult.

Here's my take-away from the posts in the thread:

1. There's a lot of clinical, logical, indirect, and anecdotal evidence for the benefit of the diet.

2. However, there is not yet any solid scientific evidence for or against a benefit of the diet in asymptomatic adults (i.e., no long-term controlled or prospective studies have been performed yet, and may never be performed). Even the medical journal articles advocating the diet acknowledge the lack of such forward-looking evidence.

I agree that point #1 well outweighs #2, particularly since the risk of the diet appears to be minimal. (Of course, one needs to be careful not to replace normally healthy whole grains with high glycemic starch and sugar, which might increase the risk of Type 2 diabetes and heart disease, two conditions apparently not otherwise associated with celiac disease, and of which I personally have a family history.)

[Maya'smom]

Hi Benjamin,

Am I glad to find you ;-) I am in the same boat and wondering about the same thing... My daughter was diagnosed with Celiac when she was 2 years old after becoming very sick. Switched to Gluten Free, got better - life is good (she is 4 now). Both my husband and I tested - I came back positive. I had no symptoms at all!! Decided to switch to Gluten free (maybe I will feel better) last August (2008). Nothing changed. I think I started to feel even worse (maybe avoiding so many things didn't do well to me). Now I am pregnant with my third child and have cravings - so I am starting to have glitches in the diet.

I am going to do the blood test just to see what my TTG level is - probably not great after last week.

It is amazing how difficult is to follow the diet when you don't have the implications. In my daughter

[Nancym]

I've also noticed that there have been numerous attempts to demonstrate a statistical benefit to population-wide screening, and none has been successful. Although logic suggests that identifying and treating asymptomatic patients ought to be beneficial, this logic does not yet appear to be supported by any persuasive evidence. As the article cited by aikiducky points out, the treatment itself may have side effects that outweigh the benefit of the treatment, e.g., patients' considering themselves "sick," which may have a negative effect on their health in numerous ways that outweighs any benefit of the treatment.

I suspect that those who are called "asymptomatic" are probably the most reluctant to rigidly adhere to a gluten free diet. If you're in pain and your body calls you out every time you goof, you're going to be a lot more careful than if your body reacts in an under-the-radar sort of way. So, how many of those people caught in a wide screening are actually adhering to the diet in a meaningful way over the course of many years? I doubt many do. You need to be motivated to do it and it seems like asymptomatic folks rarely are.

Go to pubmed.org and search on asymptomatic celiac and read what you can, that'll get you started.

[AliB]

What most do not realize is that gluten damages the body's ability to absorb nutrients. Just because you are not YET showing any external symptoms of the disease does not mean that you won't at some point in the near or distant future.

Around 300 years ago, a monk, Gregor Mendel discovered a way to hybridize wheat so that it could be grown in non-indigenous areas. This process and subsequent ones actually changed the structure of the wheat from its original 14 chromosome simple protein to the complex 42 chromosome protein molecule it is today (and with the advent of modern GM technology who knows what they have done to it now!). As a simple base carbohydrate it was a very healthy product. As a complex one it is playing havoc with the body's ability to function properly.

Interestingly, communities who are not wheat consumers generally do not suffer the range or quantity of diseases that those who consume a 'Western' high-carb, high-sugar, high junk diet do. I have always felt that I have fed my family a healthy diet - wholewheat bread, homemade cakes, not too much fried food, etc., yet as a family we all display gluten-intolerance issues.

I am diabetic. Have been for 10 years. For years I have suffered with fatigue, weight gain, IBS and other health issues, and also for quite some time prior to the diabetes I would get hypos on a regular basis. My body was obviously trying to tell me something but I didn't know what! Interestingly, there were 2 times in my life when I felt well. Both times I was following a low-carb eating plan. Of course, without realising it, by going low-carb, I was also going low or even non-gluten!

I am absolutely sure that had I known about Celiac back then and kept to the low-carb as I, like thousands of others do not process carbohydrates properly - hence the diabetes, I may well have been able to avoid becoming diabetic at all.

Whilst for those who have health issues going gluten-free is of great benefit and symptoms are generally eradicated, those who have had the good fortune to be diagnosed even though they are asymptomatic (a very rare thing) really have to look at the gluten-free diet as a form of health insurance. Why wait until the damage is so bad that you start to get sick, when you can follow it now and hopefully prevent the damage in the first place?

I was told when I was pregnant with my first baby that my gestational GTT suggested that I would become diabetic at a later stage. If I had known then that in order to prevent that and all the other subsequent health issues I have suffered with since happening, all I would have had to do was to drop gluten, don't you think I would have done that?

When you are not sick the need to change does not seem to be necessary. It's only when you can look back with hindsight that you can wish you had dealt with it when you had the chance. It's a bit like smoking. We all know that Smoking can kill. But how many people will give it up because they don't want to run the risk of dying of lung cancer? Believe me, Gluten can kill too. Like tobacco, gluten is also very addictive. None of us knows what is around the corner. Gluten damage also can lead, amongst many other things, to cancer. I kid you not.

[Nancym]

I agree that point #1 well outweighs #2, particularly since the risk of the diet appears to be minimal. (Of course, one needs to be careful not to replace normally healthy whole grains with high glycemic starch and sugar, which might increase the risk of Type 2 diabetes and heart disease, two conditions apparently not otherwise associated with celiac disease, and of which I personally have a family history.)

Ah! You're a smart man!