Physician Education Program

Here is a link to the Celiac Sprue Association’s CSA Celiac Disease & Gluten Sensitivity Physician Education Program (CSA-PEP)

This is a tremendous effort on the CSA’s behalf to help educate our nation’s physicians on Celiac Disease. I have been told by a number of doctors that what they learn in medical school is difficult to overturn. Just over 5 years ago, CD was thought to afflict 1 in 10,000 people. Today, the number is thought to be 1 in 100-133 people! 95 – 97% of those people are still undiagnosed.

Two perfect examples I have have talked about before. I had Sam’s pediatrician give him the blood test at age 3, and it was negative. I then asked him when he should be tested again, he said, “he does not need to be tested again, he will not get it.”

After my diagnosis, in my drive to figure out where this came from (for family tree purposes), I asked my parents to get tested just to make sure they did not have active CD. The gene would be the next step but it can test can be costly. When my mom went to her doctor and asked for the test, he asked her if she had diarrhea. When she said no, he said “well, then you do not have CD.” She had to convince him to give her the blood test!

The following is taken from the Celiac Foundation. Read the full article here.

“Celiac Disease is one of the most common genetic conditions in the world.
Celiac is a multi-symptom, multi-system disorder, activated by eating gluten –
proteins found in wheat, rye and barley. Symptoms vary and are not always
gastrointestinal. If you can identify with any of the symptoms or diagnoses
listed here – you might have Celiac Disease.

Symptoms of Celiac Disease may include
one or more of the following:

• Recurring bloating, gas, or abdominal pain

• Chronic diarrhea or constipation or both

• Unexplained weight loss or weight gain

• Pale, foul-smelling stool

• Unexplained anemia

• Bone or joint pain

• Behavior changes/depression/irritability

• Vitamin K Deficiency

• Fatigue, weakness or lack of energy

• Delayed growth or onset of puberty

• Failure to thrive (in infants)

• Missed menstrual periods

• Infertility male and female

• Spontaneous miscarriages

• Canker sores inside the mouth

• Tooth discoloration or loss of enamel

or

Have you or a family member ever
been diagnosed with
the following?

• Type 1 Diabetes

• Dermatitis Herpetiformis

• Thyroid Disease

• Osteopenia/Osteoporosis

• IBS

• Chronic Fatigue Syndrome

• Fibromyalgia

• Peripheral Neuropathy

• Sjögren’s Syndrome

• Eczema

Do not self diagnose. Talk to your healthcare provider about
Celiac blood tests that are available for the preliminary diagnosis. In
order to get accurate test results, it is important that you are
following a daily diet that contains gluten.

Recommended Blood Tests:

antibody (tTG – IgA/IgG)
Endomysial antibody (EMA-IgA)
Tissue transglutaminase
Anti-gliadin antibody (AGA-IgG, AGA-IgA)
Total
serum IgA “

I will tell you how Sam and I both exhibited symptoms prior to diagnosis:

Me: ZERO gastrointestinal symptoms. The occasional rash on my knees I had always assumed was a reaction to my grass allergy was actually Dermatitis Herpetiformis (DH). I developed Graves Disease (thyroid) after Sam was born. I had eczema as a small child, and I also battled canker sores (I just realized that I have not had a single canker sore since going GF.) Depression and behavior problems (was recently diagnosed with Adult ADHD) have also been frequent visitors.

Sam: Constipation.

Because of my diagnosis and my persistence (paranoia might be a better word), I truly believe I have prevented Sam from having so many more ill effects of this disease (like my much longer list!). Sam’s CD was caught so early (at 3 his blood test (tTG-IgA) was negative, at 5 it was a 36) his intestines had not even had a chance to get infected yet (his biopsy was negative). I have posted on this subject before and will post more on this later, and why we chose to bypass the “gold standard” of a positive biopsy before putting him on the diet.

My husband just found this stat:

Anti-tissue transglutaminase Antibody (tTG), IgA. This test is sometimes used alone. If this test is positive it is highly likely that the patient has coeliac disease. tTG test is not reliable in children before the age of 2. Click here for the link to the website.

To sum it up, CD is a master chameleon of a disease. What has always been considered to be a must, the “classic symptoms,” are really not so classic/common after all. By the time all of the classic symptoms are presenting…the small intestine is really sick. Everyone with CD has a different story. Why do some children start getting ill so early yet some people (like me), do not even realize they are walking around with this “silent” form of the disease until they are 30 or even older? I find it quite fascinating.