GIG of Portland Says:

WHY GET TESTED FOR CELIAC DISEASE WHEN YOU CAN JUST GO GLUTEN-FREE??

ALWAYS GET TESTED FOR CELIAC DISEASE when you are on a gluten-containing diet before you decide to try to go gluten-free!

Reasons to know if you have celiac disease (CD) or non-celiac gluten sensitivity (NCGS) before you go gluten-free are below. NCGS DOES effect the immune system, thought it is not the auto-immune aspect of our immune system. Once you go gluten-free and feel fabulous, it can be disastrous (symptoms are often worse as your immune system becomes hypervigilant to gluten) trying to reintroduce gluten back into your diet for the sake of testing. So get tested before going gluten-free.

I do not agree with the hundreds, maybe thousands of practitioners, nutritionists, health coaches, personal trainers, well-meaning co-workers or relatives who tell their patients/clients/friends, "just try going gluten-free" or "try this grain-free/Paleo diet" without being tested for celiac disease. These are some of the reasons why off the top of my head:

1) With a diagnosis of celiac disease you are indeed offered protection under the ADA, and can take all the expense of creating a gluten-free household off on your taxes (cooking pans/cutting boards/tupperware out and Pyrex containers/wood utensils/all plastic utensils + spatulas,etc) because it is a medically necessary condition, as well as the DIFFERENCE between the costs of regular gluten item and the GF item. Ask your accountant. If they don't know what you are talking about, find someone who does. There are many, many well-written detailed blog posts about this, so I won't elaborate it here.

2) with a diagnosis of CD, you can then have your gastroenterologist follow up with repeat blood work in 6 months and 12 months as well as a repeat endoscopy in 12 months to determine the level of healing/remaining damage AND it's covered by insurance. Prior to your endoscopy, interview your gastroenterologist to be sure that they will take 4-6 biopsies which is the standard of care. Most GI's only take 2 b/c they are busy. They need to take 2 from the duodenal bulb and 4 from the duodenum itself. If they want a 50% increased chance of diagnosing celiac disease, then they do a "jejeunal push" which means they push the endoscope into the next section of the intestine, the jejeunum and take a biopsy from there. Research shows a 50% increase in detection CD. (REMEMBER: lab work and endoscopy are not perfect, just standard.)

3) with CD you have a lab test that defines what is going on. With a diagnosis of CD, ALL your 1st and 2nd degree relatives should be tested and this would be covered by insurance b/c there is a family history. CD is genetic. A genetic test rules in or out the possibility of celiac disease. 30-40% of us have the celiac gene and only about 1% of the population has celiac disease. So having the gene tells you it's possible. Not having the gene tells you it's highly unlikely. You can also get gene subtyping done which tells you if you do have the gene how likely it is that you have celiac disease. Enterolab.com does this test. In Canada a lab runs the GeneSure from glutenpro.com. Celiac disease is an inherited permanent condition, and it the genes can express themselves at ANY age - 4 yrs old, 14 yrs old, 40 yrs old or 80 yrs old. If there is a relative with CD then any 1st or 2nd degree relative eating wheat/gluten who has new symptoms should be retested for CD.

4) whether CD or NCGS, you need to be 100% GF b/c research shows with "cheating" or gluten-contamination, there is an increased risk of intestinal cancer with repeated post-diagnosis exposure to gluten. And just because you have NCGS, you can have as severe if not more severe reactions to gluten than someone with CD. It works both ways. There is silent CD where the person eats gluten and doesn't feel a thing - nothing. They have chronic iron deficiency anemia or osteoporosis or elevated liver enzymes - and you don't "feel" those. They might have headaches, or fatigue or joint pain. A person with NCGS might have severe stomach or abdominal pain or diarrhea or extreme gas or heartburn, or all of the above. NCGS does NOT mean less severe symptoms.

5) there are associated cancers for you and your PCP/Gastro to watch out for including thyroid cancer, stomach cancer, intestinal and colon cancer. Knowing that you actually do have CD means your insurance will pay for more regular scans such as an early colonoscopy before 40 years old, more regular ultrasounds, etc.
6) there is an increased risk for associated auto-immune disease with a CD diagnosis: Hashimotos thyroid, Lupus, rheumatoid arthritis, adult autoimmune diabetes, autoimmune hepatitis, etc. and your PCP should screen you for these.

7) any person with CD should get a DEXA scan to ascertain bone density ASAP, even children to rule out osteoporosis - and it's covered by insurance b/c of the CD diagnosis. I've seen a 16 year old soccer player break her hip - she had just been diagnosed with celiac disease and they didn't do a bone scan.

8) your PCP or Gastro will run a full panel of vitamin and mineral lab tests to ascertain if you have a vit/min deficiency and it's covered by insurance. If you have mild, moderate or severe intestinal damage, you might have severe vitamin and mineral deficiency that needs to be addressed.

9) your holistic physician can help you heal and seal your gut and help you avoid foods that cross-react with gluten. Some foods MAY cross-react, meaning that the body mistakes them for gluten and reacts to them just like gluten, even though they are otherwise nutritious non-gluten containing foods. Important to seek help of someone who specializes in celiac disease. I've heard too many complaints of a PCP or GI saying, "You have CD, go gluten-free" and that's the end of it. Well, that's just the start!

OKAY - these are just off the top of my head. If ANYONE thinks that it's okay to tell a person to "just go gluten-free" without being tested for celiac disease first, they are insane, or just plain uneducated about the great risks they are taking with the lives of those to whom they have given that poor advice.

Do WHATEVER tests you can to rule in or rule out celiac disease FIRST before going gluten-free.