I am Very excited for “V” day! If you remember on “H” day when I posted about Heidi Kelly, I also included a video from Dr.Vikki Petersen, who shared the story of when Heidi and her family came to see her for a visit. I stumbled upon her videos on You Tube around the time I was thinking of starting my blog last Fall and have had the pleasure of chatting with her online. I was captivated by all the information she had regarding gluten and its effect on the body and immediately purchased the book,written by her and her husband, Dr. Richard Petersen, “The Gluten Effect”, which I am proud to announce will be my next giveaway. In fact, I have two books I will be giving away plus two DVDs from the Gluten Sensitivity and Celiac Forum, so stay tuned! “The Gluten Effect”, is a New York Times Best Seller and there is lots of great information in there.
One of the biggest questions that people ask me when they suspect that they need to go gluten-free is “How do I get tested?”. Today, Dr. Vikki addresses this in her post. It is now with great honor and pleasure to bring you today’s guest, Dr. Vikki Petersen….
Best Laboratory Tests for those suspecting Gluten Intolerance
My passion is to increase the awareness of gluten intolerance in the US and internationally.
Note: I use “gluten intolerance” as an umbrella term that embraces both celiac disease and gluten sensitivity.
The facts are that a scant 5% of all the celiacs suffering ever get diagnosed in our country. For a medical system that prides itself on being state-of-the-art, this is truly a terrible statistic.
Add that to the fact that while 1-4% of the country suffers from celiac disease (yes, celiac disease incidence rises with age – 2010 research), a minimum of 10 times that amount suffer from gluten sensitivity. Personally I think it’s closer to 30 times more, but research is only just beginning to address gluten sensitivity and preliminary findings shows 10% of our population suffering. Continue reading
The percentage of those suffering with gluten sensitivity who receive a diagnosis has not been researched, but I would estimate it to be less than 5%. So we have literally tens of millions of people in this country suffering from a condition that is dramatically affecting their health of which they know nothing about.
So what can we do to receive an accurate diagnosis for ourselves, our friends and family? I’ll be frank with you, it takes some work and diligence. Below is some information that I hope you find useful.
- You may need to begin by educating your doctor. Easier said than done, I realize, but depending on your relationship with him or her and their desire to learn new things, it may work.
Our book “The Gluten Effect” can be a good tool for your doctor, or our website that is full of blog material and videos (www.healthnowmedical.com). We try to be a source of truth and accuracy in the field, and as a medical center and authors we do have credibility. So feel free to use us.
2. The newest lab specializing in diagnosis of celiac disease and gluten sensitivity is Cyrex Laboratories (www.CyrexLabs.com). Cyrex is exciting because they bring four new tests to the field that promise to be more sensitive than what we have had previously.
We have been using these tests for about 5 months now and are very pleased with the results.
Of course if your doctor refuses to order them that’s a problem. But Cyrex and I will work with you. Cyrex will try to find a clinician near you if possible and my clinic, HealthNOW, is a destination clinic so we can work with you as well.
3. Enterolab is another laboratory that can be used. They are not new but they are unique in that you do not have to go through a doctor to get tests ordered. An order can be placed online and results are sent directly to the patient.
They are also completely unique in that they are able to diagnose celiac or gluten sensitivity despite the patient being gluten-free. They are the only lab who claims this ability that I am aware of.
I feel very strongly about NEVER requesting a patient to reintroduce gluten into their diet if they have determined that they are intolerant.
Enterolab also provides genetic testing.
By the way I have no affiliation with either of the labs I just mentioned, so there is no conflict of interest in my recommendations.
4. If a doctor is convinced to order a test, whether due to their own curiosity or the insistence of their patient, they will likely order a celiac panel which typically includes tTG and AGA (antigliadin antibody). It used to include an EMA test but it has fallen out of favor due to poor accuracy.
Unfortunately there are problems with the celiac panel. The tests are not sensitive in their own right, but they are made less sensitive by the fact that it is only measuring the IgA version of the tTG and AGA.
IgA is a part of the immune system that is poorly represented in blood. It is highly present in saliva, but not in blood and the above is a blood test. Further, when one is gluten intolerant, IgA is frequently suppressed, which would negate the accuracy of any test using it as a yardstick.
Further, the tTG test, at its best, cannot detect early changes in the health of the small intestine and will only show positive, typically, once 70% or more of the intestine is destroyed.
Lastly, the AGA is measuring only one of a possible sixty known portions of the gluten protein that are creating health problems. No wonder there are so many false negatives.
Therefore, if one is in the earlier stages of celiac disease or instead has gluten sensitivity, a false negative is often the result – something we want to avoid at all costs.
Some doctors are still stuck with the notion that regardless of what the blood tests reveal, the gold standard for celiac diagnosis is an intestinal biopsy. This is an out of date viewpoint and you can refer to my blog for many examples of why. But suffice to say that if you have a positive blood test that your doctor negates because a biopsy was negative, that is completely false (and bad medicine in my opinion). These same doctors are frequently unaware of gluten sensitivity as a diagnosis and for them we are back to point #1 – education!
The Cyrex Lab mentioned above offers a test that is ten times more sensitive than any we have ever had before. (I don’t use the number ten loosely. The test measures ten different portions of the gluten protein whereas before we were only measuring one.) This should dramatically lessen the number of false negatives.
5. Genetic testing is a valuable tool. Genes don’t lie. Mostly the genetic panels that are done are only for celiac disease. Enterolab however does testing for both celiac disease and gluten sensitivity and it’s a simple non-invasive test – just a swab inside the cheek.
If you do get a celiac gene test run and you possess 1 or 2 of the genes, you would often be told that you were fine to consume gluten if your lab tests were negative. I disagree with this advice which I consider akin to playing Russian roulette with your health.
Would you really rather wait until an insensitive blood test finds that most of your intestine is destroyed before embarking on a gluten-free diet? Some people will answer yes to that question. I may disagree with them but ultimately it is their body to treat as they see fit. I simply want to ensure they’re making an educated decision.
It is true the 20% of the population carries the celiac gene while only 1-4% manifests the disease. If this was occurring in me, a close friend, or family member I would run every test possible before I decided to include gluten in my diet. A major stressor, operation or illness is now known to be all it takes to turn “on” a celiac gene that had been heretofore turned off.
As an interesting corroboration to the above, I was reviewing with our M.D. this morning the case of a young man in his 30s whose father died very young from complications of celiac disease. His doctor recently ordered a “standard celiac panel” of tTG and AGA (both IgA) and there were negative. Fortunately the young man did not give up there and on his own got one of the lab tests that we’ve been speaking about. These tests were highly positive for celiac disease and we are now beginning to work with him to hopefully prevent in him the early demise suffered by his father.
Do you begin to see why only 5% of our celiacs ever get diagnosed? We certainly don’t make diagnosis easy.
I truly wish it wasn’t so difficult to get accurate lab testing. I’m sure it won’t always be this way, but right now it takes tenacity and some gumption to ensure that you get properly cared for.
6. What about a pretty ‘sure-fire’ test that is not only done without the need of a doctor but is also free? That sounds pretty good, doesn’t it.
What is this free test? A 30 day gluten (and I would recommend dairy also) elimination diet. The cells of the small intestine take 30 days to renew themselves which is why you want to do it for that period of time. Many people notice changes sooner, but it’s best to give it the full 30 days to be sure.
We do this with all our patients, while running lab tests also. Why? Because lab tests, as we have discussed, are currently far from perfect and I can think of little worse than deeming a person gluten tolerant, when they are not. It would be like sentencing someone to a lifetime of ill health while concurrently shortening their lifespan.
Some of our greatest success stories have occurred in patients who had negative or equivocal test results but who proved to themselves during an elimination diet that they were gluten intolerant. I shudder to think would what have happened had we not included that step.
So while lab testing is excellent if you can get it, a necessary additional step is a perfectly gluten-free diet for 30 days – no cheating! It’s free and it requires no permission from anyone to do.
I hope you found this informative and please do feel free to contact me regarding any further questions that you may have. Discovering if you have gluten intolerance is just not a straightforward experience in our current society. But I believe the new tests that have come available will go a long way to improving diagnosis and I am more than happy to help guide you through the experience.
We became a destination clinic for that very reason and treat patients from across the country as well as internationally. We are here to help!
To your good health,
Dr Vikki Petersen
Founder of HealthNOW Medical Center
Co-author of “The Gluten Effect”
Alimentary Pharmacology & Therapeutics. 2009 Jun 15;29(12):1299-308. Epub 2009 Mar 3.