I think it’s good to occasionally step back and focus on the basics of gluten intolerance. [Note: I use ‘gluten intolerance’ as an umbrella term that includes both celiac disease and gluten sensitivity.] Sometimes I get so caught up in writing about the latest research that I forget that every hour of every day a newly diagnosed individual is needing information on the basics - what gluten intolerance means and how they should begin the process of instituting a gluten-free diet.
This blog, the Gluten Doctors, was my first blog and one that I began after writing my book, “The Gluten Effect”. I wrote the book to embrace a disorder that was being completely ignored by the celiac community – gluten sensitivity.
Fortunately after only a few months of the publishing date of “The Gluten Effect”, major researchers in the field began to publicly agree that gluten sensitivity was a very real condition and one that warranted the attention of researchers and clinicians alike.
Let’s discuss those basics:
What is Gluten Intolerance?
As mentioned above gluten intolerance is an embracive term that includes both celiac disease and gluten sensitivity.
What is Celiac Disease?
Celiac disease has had many faces since it was first described by a medical doctor Samuel Gee in 1887. Initially it was thought to be purely a digestive problem, akin to indigestion.
It was later realized to be an autoimmune disease and small intestine destruction was considered the hallmark of the disease.
Knowledge further advanced and it was realized that celiac was more a disease of the immune system that affected most every part of the human body. From the heart to the lungs, from the liver to the brain, there is no system of the body that gluten doesn’t touch.
We now realize that celiac disease affects the nervous system more so than the digestive tract and that many so afflicted have absolutely no digestive complaints whatsoever – yet they still have celiac disease.
This last sentence would be a surprise, and in fact would be refuted, by many clinicians in this country today. They would be wrong but that wouldn’t make them any less emphatic about it. I cannot tell you how frustrating it is to hear from people who ‘know’ they are gluten intolerant but are told by their doctor that if they have no digestive complaints they have no need to even be tested for the condition.
Classic celiac disease, as described so many years ago, consists of a profile that many clinicians, including gastroenterologists, embrace as ‘gospel’. This classic picture would present with an underweight patient with chronic diarrhea, abdominal pain and bloating.
Classic celiac disease exists, but it in no way describes the majority of cases – quite the contrary.
Celiac disease affects 1% of the population and it rises to about 4% with increased age.
How do you know if you have celiac disease? Good question. I wish I could tell you there was an absolute fool-proof test. Most recent research has this to say:
A highly positive tTG test with a positive AGA test (both blood tests) are highly correlative with celiac disease.
Do you have to have a positive intestinal biopsy to ‘confirm’ the blood tests? Many clinicians would say ‘yes’ and they would be wrong. Why? You can definitely have celiac disease and have a negative biopsy. To say otherwise is condemning many celiac sufferers to a shortened, unhealthy lifespan.
[I can see the comments coming in already. I know, you’ve been told otherwise. It is incorrect.]
So what does one do if they get a negative test but they are suspicious of being gluten intolerant? I have two suggestions:
1. Try a gluten-free diet for 30 days and see how you feel. [Feeling better is a valid test in itself.] Do remember that this is a zero tolerance policy so educate yourself first and then begin. There’s no point in a ‘mostly gluten free’ approach – it’s got to be as perfect as possible.
2. Get a genetic test to see if you carry the genes for celiac disease or gluten sensitivity. Either one makes for a lifelong gluten-free diet in your future, but I think it’s good to know for yourself as well as for other members of the family, which, if either, is positive. I’ve heard researchers state that there are likely more genes that code for gluten intolerance than we know about, but the genetic test available is still a good place to start.
Symptoms Associated with Celiac Disease
There are over 300 symptoms and conditions associated with celiac disease and gluten sensitivity. I will include some of the most common ones below to give you an idea if you or someone you care about potentially falls into this category:
· Rheumatoid arthritis
· Thyroid disease
· Liver disease
· Acid reflux
· Brain fog/Poor memory
· Stunted growth
· Hormonal imbalance
What is Gluten Sensitivity? How is it Different from Celiac Disease?
Gluten sensitivity is very similar to celiac disease. They are both genetic conditions, they both are known to affect most systems of the body, and both require a lifelong gluten-free diet.
The estimation of incidence of gluten sensitivity is much higher than celiac disease - 10% of the population. This is new research in an area that is in its infancy. Personally I feel that the incidence is likely much higher, perhaps up to 30% or more of the population. This personal estimate is based on my clinical experience and it is shared by others in the field. But I am not a researcher.
There is some thought that gluten sensitivity is less serious than celiac disease. This is not true. Both conditions can shorten life expectancy and create hundreds of different symptoms and conditions. Celiac disease is, in itself, an autoimmune disease and gluten sensitivity is not. Some extrapolate this to mean that gluten sensitivity cannot be a causative factor in creating autoimmune disease. I have not found this to be the case. In fact we have, here at the clinic, seen amazing improvements and sometimes reversals, of autoimmune diseases in patients who were gluten sensitive but who did not suffer from celiac disease. Once again this is my clinical experience, there is not much if any research in this area.
How do you Test for Gluten Sensitivity?
There are tests that exist for gluten sensitivity, although they are not ‘recognized’ currently. Does that mean they do not work? Not at all. I am quite pleased with the results of the testing I use. I find they correlate quite well with patient symptoms and improvement once a gluten-free diet is instituted.
The opinion that no ‘accepted’ gluten sensitivity test exists is simply a function of how new the field is. As mentioned earlier, it’s only been two years since general acceptance of the existence of gluten sensitivity occurred.
So what should you do if you suspect gluten sensitivity? I am happy to share with you the labs that I use and genetic testing is available as well. Ultimately the 30 day elimination diet is something I always include, regardless of what testing is done because I trust that as a valid test. I typically run the blood test and back it up with the 30 day elimination diet. The lab testing is not perfect, none of them are, but the body will tell you what it thinks of gluten if you eliminate it completely from your diet for 30 days.
If I am Gluten Intolerant How Do I Get Started?
1. You must educate yourself. I mentioned this is the first blog I ever created. Since then I have merged my website, blogs and you tube videos to act as a comprehensive resource. My ‘gluten sensitivity and celiac’ blog is at this address: http://www.healthnowmedical.com/category/gluten-intolerance-celiac/ you can also go to this page (http://www.healthnowmedical.com/am-i-gluten-sensitive/gluten-foods/) to learn the foods that are safe and unsafe when embarking on a gluten free diet.
2. Be patient. It is not easy to change your diet so radically and the change will likely not happen overnight. You will make mistakes, unfortunately. But learn from them and continue to be patient with yourself as you learn more about food in general and gluten in specific. If you hang in there you will be rewarded with greatly improved health.
3. Find a clinician to help you. This can be difficult which is why we created a destination clinic wherein we see patients from across the country and internationally. We are not the only ones who know how to take care of you, but the numbers are truly dismally small. We’ll try to help you find someone local to you but if that doesn’t work, we’re happy to help.
4. Finally, I wish I could say that eliminating gluten was the only step you had to take to restore optimal health. Certainly it should be, but alas, there are other steps that need to be taken. Why? Removing gluten is simply not sufficient to restore the health to all the parts of the body that gluten has affected. From healing the small intestine, to regaining the strength of the healthy probiotic population, to balancing hormones and more - all these factors must be assessed and treated as needed. We call these the secondary effects of gluten and they are not difficult to treat.
I hope you found this helpful. Please let me know any questions you have or other topics you’d like to see me address.
I and my team of doctors are here to help. If you’d like to set up a health analysis give us a call at 408-733-0400. The initial consult is free.
To your good health,
Dr Vikki Petersen, DC, CCN
Founder of HealthNOW Medical Center
Co-author of “The Gluten Effect”
Author of “Gluten Intolerance: What you don’t know may be killing you!”