Being diagnosed with celiac or gluten intolerance is not always straightforward. It often takes a long time before reaching a diagnosis for several reasons, this condition is still not on many doctor’s radar and gluten tests can be incomplete. If you are struggling for a diagnosis here are a few things I have learned along the way.
Key topics in this article
- The gluten epidemic
- Lack of awareness among doctors
- My personal journey
- Incomplete gluten testing
- Gluten is not the only destructive intolerance
The gluten intolerant epidemic
It is difficult when you feel like death to muster up the energy to go to doctor after doctor trying to find a solution. It took me 5 years before being diagnosed. Most of my symptoms were overlooked; my rash, body pain, burning stomach, and severe fatigue. I was told it was all in my head, and another told me it was just anxiety and I was prescribed Xanax.
Unfortunately, this is all too common among those with gluten intolerance. Gluten intolerance is not commonly checked for, current blood tests are incomplete which can miss up to 1/2 of those with gluten sensitivity, and removing gluten alone is often not enough. This is what I have learned from over a decade of living with celiac disease.
A Canadian study found it took 12 years from onset of symptoms till a celiac diagnosis was made, and this only includes those that test positive for celiac disease, not the non-celiac gluten intolerant .
Another study found that this disease is exploding rapidly, and is grossly under diagnosed, simply because it’s not on doctors’ radar . Gluten intolerance has become a modern day epidemic that is being under diagnosed, and testing is inadequate.
The Fastest Growing Autoimmune Disease
It’s been a common sentiment only celiacs making up less than 1% of the population need to avoid gluten. However, this isn’t true any longer. Celiac disease is the fastest growing autoimmune condition in the past 30 years .
Celiac disease has become an epidemic, and celiacs are not the only ones suffering from gluten intolerance. A less understood condition non-celiac gluten intolerance is even more widespread than celiac disease, and they have it just as rough .
The non-celiac gluten intolerant group, tests negative for celiac disease despite having similar symptoms, like: foggy-ness, depression, ADHD-like behavior, abdominal pain, bloating, diarrhea, constipation, headaches, bone or joint pain, and chronic fatigue.
A study found they too are having an immune reaction that is destroying their intestinal cells .
One of the environmental change is that the genome of modern wheat is more allergenic, than traditional wheat. A study concluded that modern wheat is potentially turning on celiac genes, that up to 40% of all of us carry  .
Science has identified other environmental factors that is contributing to this epidemic, both GMOs and glyphosate are implicated in destroying our intestinal health  . Glyphosate particularly was directly linked to causing gluten intolerance in an animal study .
So I think we have established that this isn’t a rare genetic condition that very few of us need to be concerned with. Hopefully doctors become more aware of the gluten intolerant epidemic.
There seems to be a sentiment that gluten free is just a marketing ploy or a fad among the health nuts, this may have created a bias toward this condition.
Read Should Everyone be Gluten Free, I wrote this article to determine if my un-diagnosed toddler should remain on a gluten free diet. I wanted to know if everyone would be better off gluten free. This is my verdict.
Diagnosis seems to be challenging for two reasons
- Lack of awareness among doctors
- Inadequate testing – Can gluten tests be wrong?
Lack of awareness
12 years to receive a diagnosis for a growing common condition is sad. That is 12 years of destruction from continuing to eat gluten. This is a Canadian statistic, I don’t know what it is in the U.S. Personally it took me 5 years, and it was a frustrating process.
Inadequate Testing – Can Gluten Tests be Wrong?
The standard testing for gluten intolerance typically begins with a blood screening. If the blood screening is positive then a biopsy is performed to determine tissue damage. If all comes back as positive then celiac disease is confirmed .
The problem with this is first, celiacs are not the only ones being damaged by gluten. Non-celiac gluten intolerance is even more common than celiac disease.
Secondly it is estimated 50% of those with celiac disease have a negative blood test . Meaning they are told they have no issue with in gluten, when in fact they do.
The standard screening blood tests checks for an immune reaction to alpha gliadin. Gliadin is only one type of protein in gluten. Gluten consists of over 100 proteins, so you can see why such a small focus could be so misleading.
An excellent article by Chris Kesser explains the incompleteness of standard celiac screening tests for gluten intolerance. Current testing checks for antibodies to alpha gliadin, transglutaminase-2, deamidated gliadin, and endomysium .
As explained by Chris Kesser,
“people can (and do) react to several other components of wheat above and beyond alpha gliadin, the component that is implicated in Celiac Disease. These include other epitopes of gliadin (beta, gamma, omega), glutenin, wheat germ agglutinin (WGA), gluteomorphin, and deamidated gliadin….People can react to other types of tissue transglutaminase.”
I was fortunate as I finally found a doctor that is very current on the gluten intolerance epidemic, and he was aware of better gluten tests.
My doctor recommended Cyrex Labs, I took the Array 3 and Array 4 blood tests. The array 3 thoroughly tests for sensitivities to many proteins in gluten, not just alpha-gliadin.
The array 4, tests for cross reactive foods. A cross reactive food, is a non-gluten food with proteins similar to gluten that may cause a destructive immune reaction, like dairy or coffee.
Labs by Cyrex
Gluten is not the only destructive intolerance
Currently the only course of treatment for those with celiac disease or gluten intolerance is to remove gluten from the diet.
However, studies are finding simply removing gluten from the diet, is not enough. Studies found even on a strict gluten free diet, leaky gut persists and complete intestinal healing is rare.
- A study of 429 patients with celiac disease found “complete normalization of duodenal lesions is exceptionally rare in adult coeliac patients despite adherence to a Gluten Free Diet” .
- Another study of 381 celiac disease cases found, “Mucosal recovery was absent in a substantial portion of adults with Celiac Disease even after two years of a gluten free diet .
- This study compared Celiacs on a gluten free diet for one year to healthy individuals, their study found that Celiacs had greater intestinal permeability despite being gluten free . This indicates going gluten free is not enough. Celiacs still have leaky guts, despite being gluten free.
Multiple studies are showing that going gluten free is not enough to treat gluten intolerance. Even on a gluten free diet lesions are not healing and neither is leaky gut. Leaky gut is suspected of causing many food allergies and chronic diseases. So why, is going gluten free not enough?
Gluten Free Cross Reactive foods
One reason gluten free is typically not enough, is because there are many proteins structurally similar to gluten, and your body may not be able to tell the difference.
Coffee has proteins similar to gluten, your body may react to coffee in the same way as it does gluten. Eating foods you are having a cross reaction to will cause damaging inflammation.
These other similar proteins found in non-gluten foods can still be causing you damage, and be preventing healing.
As an example casein the protein found in milk is very similar to gluten. 50% of those with gluten sensitivity also have immune reaction to milk .
List of Gluten Free Cross Reactive Foods
The milk cross reaction is well documented, but here is a list of less well known foods that can cause cross reactions in those with a gluten intolerance. Your body may treat these foods like gluten :
- milk chocolate
Healing not occurring on gluten free diet alone
This helps explain why those with gluten intolerances are not healing, because it’s common for us to react to more than just gluten. If we are constantly triggering immune responses it is unlikely our body will have the opportunity to heal. The Cyrex Array 4 checks for these cross reactions.
My Story: Gluten Intolerance was an accidental discovery
On my own I discovered that I felt better gluten free. I was having severe migraines, body pain, fatigue, a rash across my face, burning stomach, and felt emotional for no reason. It felt like I was going to burst into tears frequently for no reason.
I went to my general doctor and told him my complaints. He chalked it all up to stress, and prescribed Xanax. I didn’t have the slightest idea what the problem was, but I knew stress wasn’t the cause. My life was no more stressful than before.
Tired of the rash on my face, which I later learned was the lupus rash, I tried a food cleanse to improve my complexion. It was a 3 day cleanse, the cleanse was unintentionally gluten free. During the cleanse, my skin looked better and I had no migraine. My mom was already gluten free, so after toying with my diet for months I concluded I too was having an issue with gluten.
I went “mostly” gluten free, thinking a little bit here and there was okay and switched to gluten free products. Note, if you have an issue with gluten there is no such thing as a little bit will be okay. A couple years later I felt like I was going to die, worse than I was before. If you are already gluten free and still feel bad, read this.
Needing a doctor’s help
Seeking help again, and living in a new town I waited months to see this highly reviewed general doctor. I explained, that I had removed gluten from my diet, and it seemed to help for awhile, but now I am feeling horrible again. She told me I shouldn’t do that and only a biopsy can diagnosis celiac disease.
Not proclaiming I had celiac disease, I was only sharing my observation. She then added, have you been to a psychiatrist? I recommend you seek a psychiatrist.
Absolutely frustrated I walked out feeling completely on my own yet again. This is quite common for those that suffer from autoimmune disease, because on the outside you can appear young and healthy but feel like death on the inside. It is so hard when you feel like death, and you have been waiting months for an appointment only to be dismissed.
Trust yourself and don’t be deterred
My point is as frustrating as it is, don’t ever be talked out of listening to your own body. You know your body better than anyone, don’t be discouraged by unreceptive doctors. Stay focused, your responsible for your own health. Keep searching until you find a health professional that is informed.
I had only seen this general doctor, because the rheumatologist I was wanting to see required a referral from a general practioner. Later I had to beg the rheumatologist to see me without a referral.
The rheumatologist ran blood-work and diagnosed me with lupus, and prescribed a medication. The prescriptions provide no cure, and came with a long list of side effects.
I was only wanting a diagnosis, so I knew what we were dealing with. Looking for a more natural solution, I sought help from a alternative doctors.
Finally a great doctor – Informed on Gluten Testing
I had begun seeing a great alternative doctor, who was very knowledgeable on the complexities of autoimmune diseases and was well educated on gluten intolerance.
If you would this doctor’s contact information email me, he provides phone consultations and is the best doctor I have ever worked with. He thoroughly analyzes blood work and labs like no one else. At least in my experience, and I’ve been to many doctors in my life. I’ve had autoimmune disease since I was 5.
Anyhow, he ordered very thorough blood work to test for gluten intolerance, by Cyrex Labs. Cyrex labs has very thorough gluten tests, unlike the standard gluten tests given by most doctors.
A 5 year process to reach diagnosis
During this time I had many doctors both alternative and conventional. After this thorough testing, my conventional GI doctor appointment rolled around. He reviewed my bloodwork from Cyrex labs, and was confident I had celiac disease based on labs alone.
He didn’t perform a biopsy the standard for an official celiac diagnosis. He did proceed with the endoscopy, the camera showed I had several lesions and inflammation in a healing stage. I believe the healing was from the recent change in my diet, based upon my Cyrex lab test. I had recently removed cross reactive foods, and was strictly avoiding gluten contamination.
Solution – Good Gluten Tests
The doctor most instrumental in improving my health recommended the following Cyrex blood tests:
Cyrex Array 3: Wheat/Gluten Proteome Reactivity & Autoimmunity – Tests for 12 of the most common wheat and gluten allergens
Cyrex Array 4: Gluten-Associated Cross-Reactive Foods and Foods Sensitivity – Checks for cross reactions to other non-gluten containing foods.
These tests are more complete then the current standard that focuses on an immune response to alpha gliadin , and unfortunately those allergic to gluten are likely allergic to other non-gluten cross reactive foods. Continuing to eat allergenic foods keeps you in an inflammed state and prevents healing.
When you are ill it can be so challenging jumping through the hoops of the health care system. When you are sick and everything hurts and a doctor recommends a psychiatrist, because it’s all in your head is an isolating frustrating experience.
I am not alone, studies find doctors are just not aware of how common gluten intolerance has become. This condition has become a modern day epidemic, and it seems environmental factors are to blame: modern wheat, pesticides, gmos, for more on this read, Everyone Should Stop Eating Gluten? it dives deeper into this epidemic and the environmental factors.
And then, even when a doctor does recommend testing for gluten intolerance, the standard gluten test is lacking. So, can gluten tests be wrong? Yes, it’s estimated 50% of those with gluten intolerance will be missed by the current incomplete standard testing .
The only course of treatment is to remove gluten and studies find this isn’t enough. Celiac are not healing on a gluten free diet. Ideally everyone with a gluten intolerance should also take the array 4 test to check for cross-reactive food allergies. Eating cross reactive foods will keep you inflammed and prevent healing.
Good testing was a real game changer in getting my life back. Removing the cross reactive foods helped me immensely, and now I am focused on healing leaky gut. What are your thoughts, experiences, advice, questions with gluten intolerance?
Recommended Gluten Tests:
Cyrex has developed blood tests that are more complete than the standard celiac blood screening. I took the following Cyrex blood tests:
Should Everyone Stop Eating Gluten? Why is there a gluten epidemic? Should everyone be gluten free?
Gluten free and still sick: Reasons why gluten free is not enough, and what to do about it
- Gut & Psychology Syndrome: Healing leaky gut
- Nourishing Traditions: The how and why to preparing traditional healing foods
- Nourishing Broth: The healing power of bone broth