Despite the growing awareness about gluten intolerance, most doctors won’t diagnose a person with ‘gluten intolerance’.

Instead, they will look for evidence of Celiac disease.

To learn more about Celiac disease and how it’s diagnosed, please see What is Celiac Disease?

6 Problems with Standard Tests for Gluten Intolerance

1. Full blown Celiac disease, with autoantibodies leaking into the blood and damage to the intestinal villi, is not always present in people who have gluten intolerance even if their symptoms are severe. Also, a biopsy does not look at the entire intestine, only a small sample, so damage may be present in other portions of the intestines than the one tested.

2. Issues with gluten don’t always show up as digestive symptoms including weight loss, yet most doctors do not realise this

3. If a person has been on a strict gluten free diet for a while, blood tests will come back negative

4. Some people don’t produce the autoantibodies at all, no matter what is actually going on inside the body

5. Doctors will sometimes claim that adults don’t ‘get’ Celiac disease, that it has to be present in childhood to be real

6. Some people are afraid to be tested by their doctor because if they have Celiac disease they have a higher risk for certain disease and may have problems with their insurance company

The truth is that the seeds of Celiac disease can start in childhood and not manifest until much later on.

There will be times when a person seems to recover – they will feel fine for a long time, even YEARS, then suddenly react again.

Gluten issues can be sneaky, triggered after other illnesses, pregnancy and for reasons yet unknown.

As horrible as Celiac Disease is, in some ways a person is lucky if they test positive for Celiac in the traditional way.

Why?

That will be taken seriously by doctors.

But when you consider that 1 in 250 people have Celiac disease, or as high as 1 in 133 in the US, yet most of them do not know it (again, please see What is Celiac Disease? ), you can understand why doctors have a LOT to learn in order to properly diagnose and treat gluten issues overall.

2 Solutions

1. Test Yourself for Gluten Intolerance for Free

Yes, you can do a self test without getting blood work or other lab tests.

How?

Go on a strict gluten free diet (no cheating) for at least a month.

For a list of gluten free foods that are safe to eat on a gluten free diet, please read Gluten Free Foods List

For a diet that is naturally gluten free, see Hunter Gatherer Diet

If your body is sensitive to gluten or has been damaged by gluten, it will take longer than a month for it to fully heal.

But chances are good that you’ll notice a marked improvement of some kind within a couple of weeks after going fully gluten free.

You might be surprised by how gluten has been affecting you after you’ve been off it for a while. It might simply be digestive, but it also may be contributing to pain in your body, skin problems or even neurological symptoms.

You can, of course, have your doctor test your blood (as long as you haven’t been gluten free for a while) in case you DO have full blown Celiac disease.

But, as I described above, that may not tell you anything – it might not show up in your blood even if gluten is a problem for you.

Remember: if the antibodies DO show up in your blood and the doctor feels that gluten isn’t a problem for you because your biopsy was fine, beware – you may be on your way to developing Celiac Disease or other disorders.

If you are gluten intolerant, only a gluten free diet can protect you from developing gluten related diseases.

Also, please keep in mind that casein (a protein in milk) intolerance can go hand in hand with gluten intolerance.

You can avoid dairy products in addition to gluten foods after a month if you haven’t noticed an improvement in your health and well being.

See Gluten Free Casein Free Diet

2. Order What May Become the New “Gold Standard” Test for Gluten Intolerance

If you want to get what may become the new gold standard test for gluten intolerance, not just Celiac Disease, consider doing what I did (thanks to the recommendation of several people I know who are Celiac or gluten intolerant):

Get Tested by EnteroLab in the U.S

Dr. Kenneth Fine, M.D, of Enterolab is one of the leading experts on Celiac disease and gluten intolerance.

You can do the test even if you have eaten a gluten free diet for up to 2 years. Or, if you have been on a gluten free diet for several years, you can use this test to make sure that your diet truly is gluten free (because cross contamination with gluten is common, particularly if you dine in restaurants and buy food that is processed alongside gluten foods).

Why? Dr. Fine discovered that if you are sensitive to gluten, your body will produce autoantibodies in your intestines for a LONG time after going gluten free. His research shows that this is a much more accurate way to diagnose gluten intolerance than standard blood tests.

The test is done via stool sample, which you freeze and then ship via courier (prepaid).

The test isn’t cheap, but it’s very comprehensive.

You can also order a genetics test for the gluten sensitive and Celiac genes via Enterolab (done via saliva), and tests for casein, egg, yeast and soy intolerance (stool sample). To save money, order a package of tests at a time.

Although I knew that gluten was a problem for me, seeing the paper ‘proof’ helped. Perhaps it will help you too.

Please write to Enterolab with your questions. They are very friendly and professional.

Note: If you live in Canada, you can order the Biocard home testing kit to test your blood for evidence of Celiac, but as mentioned above, this may not tell you anything. Also, if you want an official diagnosis for full blown Celiac disease, you’ll need to get tested by a doctor.

PS When some people stop eating gluten foods, they have withdrawal symptoms for a short time – perhaps 3-6 days. The symptoms may feel like a minor flu. I didn’t experience that when I dropped gluten, but did when I dropped dairy from my diet (I tested positive for casein intolerance). Some foods, notably gluten and dairy, seem to be addictive for some people. Fortunately the withdrawal period is not long.

For an excellent overview of Celiac disease and gluten intolerance, I recommend the book Dangerous Grains by James Braly M.D. and Ron Hoggan M.A.

What is Celiac Disease?

In people with Celiac disease, also called Celiac Sprue or gluten intolerance, the body’s immune system responds to the proteins that are referred to as ‘gluten’ in certain grains (wheat, rye, barley, spelt, kamut, triticale. See Foods Containing Gluten) by damaging the lining of the small intestine.

The lining of the small intestine contains small, finger-like growths called villi. The villi absorb nutrients from food, thus if the villi are damaged, the body’s ability to absorb nutrients is compromised.

Diagram of the small instestine including the finger-like villi which are damaged in Celiac disease

Symptoms

Symptoms of Celiac disease vary. Digestive symptoms are more common in infants and young children.

Common Symptoms in Children

• abdominal bloating and pain
• vomiting
• chronic diarrhea
• constipation
• pale, foul-smelling, or fatty stool
• weight loss
• delayed growth
• short stature
• delayed puberty
• dental enamel defects
• irritability

Adults are less likely to have digestive symptoms. Instead they may have one or more of the following, which doctors usually won’t associate with Celiac disease (which leads to misdiagnosis):

Common Symptoms in Adults

• unexplained iron-deficiency anemia
• low vitamin levels – especially iron, calcium and folate
• fatigue
• bone or joint pain
• arthritis
• bone loss or osteoporosis
• depression, anxiety, and mental illnesses like schizophrenia
• tingling numbness in the hands and feet
• seizures
• missed menstrual periods
• infertility or recurrent miscarriage
• frequent canker sores inside the mouth
• an itchy skin rash called dermatitis herpetiformis

Many people with Celiac disease have no apparent symptoms, but the long-term complications of Celiac disease include malnutrition, which can lead to many health problems and diseases. For example, thyroid disease and other autoimmune disorders, osteoporosis, and miscarriage are sometimes the result of the Celiac disease.

People with Celiac disease are also at an increased risk for cancers of the intestine and liver disease.

How Common is Celiac Disease?

1/3 – 1/2 of humans have the genes that can predispose them to Celiac, and approximately 1 out of every 250 people has Celiac disease. The numbers may be as high as 1 in 133 in the US.

The problem is that only 1 out of 10 people with Celiac disease are diagnosed and aware that they have Celiac.

Celiac affects whites more often than non-whites, and females more than males.

How is Celiac Disease Diagnosed?

The standard test for Celiac test is a blood test.

In full blown Celiac disease, a person will have higher than normal levels of certain autoantibodies in their blood. Autoantibodies are proteins that react against the body’s own cells and tissues. To diagnose Celiac disease, the blood is tested for high levels of anti-tissue transglutaminase antibodies (tTGA) or anti-endomysium antibodies (EMA).

In order to be tested by blood for Celiac disease, a person needs to be eating gluten. If a person stops eating foods with gluten before the test, the results may be negative even if the disease is present.

Please see Gluten Intolerance Testing: 6 Problems with Standard Tests and 2 Solutions

If blood tests are positive,  a biopsy of the small intestine will be performed to confirm the disease. The doctor will remove tiny pieces of tissue from the small intestine to check for villi damage. The procedure is painless because anesthetic is used.

Note: if you live in Canada, you can order the Biocard home testing kit to test your blood for evidence of Celiac

Treatment

Celiac disease often goes untreated for many years because the symptoms of Celiac may not be present or they will seem to be symptoms of other diseases and disorders.

The only treatment for celiac disease is a gluten-free diet.

See Gluten Free Foods List

And Hunter-Gatherer Diet

If gluten is eliminated from the diet, the small intestine will heal and symptoms will lessen or completely disappear. In children healing can be rapid, within 3-6 months, but in adults who have had Celiac for many years and thus may have experienced more damage, healing may take up to 2 years.

In rare cases damage to the villi will continue despite following a strict gluten-free diet. This is called refractory Celiac disease. People with this condition often need to receive nutrients directly into their bloodstream through a vein, or intravenously. Researchers are still evaluating drug treatments for refractory celiac disease.

But the good news is that for the majority of people, a gluten free diet is the solution and cure for the symptoms of Celiac and gluten intolerance. :)

Now it’s possible to test foods for gluten contamination with a home testing kit from ELISA Technology Inc, the same company that offers comprehensive allergy testing. The test strips are small and portable and can detect gluten down to 10 ppm (parts per million). Most companies can label food gluten free at 20 ppm, so this test offers an additional margin of safety.

The test strips are single use only. A pack of 2 costs approx. $25 USD, but if you purchase the test in larger quantity, the price per unit is lower.

I haven’t used the kit myself but have read very good things about it. Peace of mind is worth a lot!

Find out more here:

EZ Gluten Test