Friday, July 09, 2010

Negative Lab Tests for Celiac

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The following question comes from a student studying nutrition.  My book “The Gluten Effect”, as well as a lecture that I presented to the students is part of the curriculum at Hawthorn University.

"I just completed the Understanding Gluten Intolerance and Preventing Celiac Disease course through Hawthorn University.  Your book and lecture through Hawthorn were so informative.  It seems as if you have the most up to date information on this topic-more so than many other books, articles and websites out there.

My question is about diagnosis of Celiac Disease.  What if someone has not had any tests or their tests were negative, yet a gluten elimination diet has improved their symptoms?  They may have celiac but without the diagnosis of villous atrophy through an intestinal biopsy, it cannot be proved, is this correct?   Is the diagnosis of celiac that important, if the patient knows that they are sensitive to gluten?

One of my concerns is that given our current health care system, many people barely see a doctor and when they do, it seems unlikely that the doctor would recognize symptoms as being related to gluten sensitivity. Is suggesting an elimination diet the best way to determine gluten sensitivity or celiac, in the absence of proper health care?  It seems as if a patient who responds well to a gluten free diet might be likely to acknowledge that gluten is problematic for them if the diet shows promising results."

I think this student really cuts to the heart of the matter where we are failing so many millions of people in our country.  It is quite true that most doctors do not recognize the symptoms related to gluten intolerance.  All too many clinicians are stuck in the model they were taught as students that labels celiac disease as a disease causing extreme weight loss, severe diarrhea and digestive pain.  If they don’t see those particular symptoms, most will not consider gluten intolerance as a potential diagnosis. 

While I haven’t conducted a study to this effect, I would wager based on the vast number of people who contact me from around the country, that most patients are diagnosing themselves and then trying to encourage their doctor to corroborate what they suspect.  All too often I hear from these frustrated individuals who have proven to themselves that gluten is an enemy to their health but they are unsuccessful in getting their doctor to order any tests to confirm whether it is celiac or gluten sensitivity.

It is a double edged sword and both sides can cut deeply.  First we have the desire to diagnose celiac definitively as it is a serious autoimmune disease linked to other autoimmune diseases as well as cancer.  Would we like to identify every celiac?  Of course!  But as our student so correctly points out, all too often testing is negative despite the person feeling better on a gluten-free diet. Whether it’s a blood test (tTG or deamidated gliadin) or intestinal biopsy, the problem is the lack of sensitivity of available testing. I am hopeful that the future will bring labs that are highly sensitive for both celiac and gluten sensitivity, allowing an early diagnosis for one and all.

And now the other side of that sword - what should we do in the meantime?  I feel very strongly about this point and I know that traditional gastroenterologists disagree with me.  But my viewpoint is not a research-based one, but rather a clinical one.  In other words my sole interest is in the patient’s health and improving it as rapidly as possible.  That cannot be done by encouraging someone to continue eating gluten simply because the test was negative or because their symptoms don’t fit the model of what one thinks celiac “looks like”. 

Might they have celiac but it just hasn’t been identified yet? Do they have gluten sensitivity?  Does it matter which? There’s the debate in a nutshell.  But I come back to the patient.  Could I ever possibly recommend that someone continue eating gluten when they have a negative response to it?  Never. My concern is that during the time frame of continued gluten consumption the body might break through the threshold of beginning an autoimmune disease or cancer – a threshold that is almost impossible to come back from.

This concern is based on clinical experience.  Too often I’ve seen the gluten intolerant patient go back to consuming gluten and then develop a serious condition that couldn’t be reversed.  I wouldn’t wish that for anyone.  And the frustration of having this happen because a gastroenterologist insisted that a known gluten intolerant patient restart gluten consumption for 6 weeks in order to be able to perform an intestinal biopsy, is beyond my tolerance.  Usually these patients crawl into their GI’s office after 1 to 3 weeks begging them to do the test early because they feel so horrible.  And when that gluten ingestion results in the development of a serious secondary disease it is very sad because it was all so preventable.

There is genetic testing available but that isn’t foolproof either.  Genetic testing for HLA-DQ2 and DQ8 only rule out celiac and there is no agreed genetic profile for gluten sensitivity, though some are currently working on it.

I do initially recommend a comprehensive blood test that evaluates both for celiac and gluten sensitivity in a person currently consuming gluten.  Certainly if either test is positive then we have our diagnosis.  And it does seem to be the case for many people that having that piece of paper from the lab showing a positive result helps with compliance. But if the tests are negative or borderline I still recommend a gluten-free trial for 30 days due to the aforementioned lack of sensitivity.  The true gold standard test is this dietary one. The body won’t lie.  If you completely eliminate gluten and you feel better, you ARE gluten intolerant – end of story.

Lastly I believe we also fall down in our lack of education of our patients.  It if for this reason I write this blog, and tape YouTube videos – it’s all in the name of education.  If someone is diagnosed with gluten intolerance and they are not educated to the dangers of cheating and exactly how gluten can cause ill health, they will most certainly lapse on their diet to one degree or another.  I strive to keep that education as comprehensive and easy to understand as possible for just that reason.

I hope you find this helpful and please let me know if I can be of further assistance.

To your good health,

Dr Vikki Petersen




2 comments:

Raelha said...

I think test results are seen as important since sometimes it is hard to be 100% certain of the allergy/intolerance/sensitivity.

For example, it would be a relief to have my doctor confirm my own suspicions. As it is, it's hard to be sure when I get a bad headache/fuzzy head/migraine/dizziness/nauseousness that is is down to the small amount of gluten I accidentally ate a few days earlier or if it's just me worrying that I will be getting a migraine because I ate it that's causing the problems. I've been keeping a food diary since January and also noting down any medical problems to see if there are any patterns. It's going to take a while but this way I'll be more certain, with or without affirmative test results.

Mary Anne said...

I am 55 and have been gluten free by choice for 5 years. I had always had gas, and bloating for as long as I could remember, which of course could be due to a number of other things. However, after having a physical exam at 50 with a normal blood screen, I was happy with most of my numbers but thought my hemoglobin could be better, which at 7, was technically within normal range. I had read whatever I could find on celiac disease and thought I would just cut out gluten and see what happened. The first thing I noticed after a month was an absence of gas, more energy. The next time I had my hemoglobin done it was 16. Also I always had had at least one bad cold a year which invariably turned into bronchitis. Since being gluten free I have not had a cold for the last five years. I doubt that I could "make" my body make those changes just by "believing" that I am gluten intolerant. I cannot think of any other reasons why those things would remain constants. As long as I am very careful with my diet--while difficult-- have even called food companies to find out if the caramel coloring is of malt or cane origin, etc-- the results are worth it. Ironically I might not test positive, so I have not brought it up with my Doc.

My impression of the general complete misunderstanding of this condition has been well supported in my experience of trying to explain it. Most people in the US have had little or no education regarding physiology anyway.. My friends in England and France know what I am talking about without my having to explain. I have run in to more than one American nurse who have tried to correct me adamantly that gluten intolerance is an allergy not an autoimmune disorder.( Alas, it has been my impression that many American nurses are functional idiots, but very good looking..who knows why!) Anyway, I am just going to keep up with a gluten free diet which is probably healthier even for people without gluten intolerance. I miss croissant and baguettes which are impossible to make gluten free, but beyond that who cares? I only hope that in the near future the Gov. will pass legislation which requires all foods to be clearly and accurately marked for gluten or the lack of it, especially if such are from another country. MM