Celiac Testing Myth #1 - No Symptoms = No Celiac

Silent celiac is a killer. Unbeknownst to you, every time you eat gluten your body attacks the lining of your intestine. When that happens, the villi become damaged and stop being able to absorb nutrients from your food. Over time damage progresses and the road to recovery gets longer and longer. Symptoms may be mild at first, or nonexistant. But damage is being done, putting you at higher risk for malnutrition, non-Hodgkin’s lymphoma, stomach cancer, osteoporosis, neurological issues, gallbladder problems, and more.

People used to think celiac only caused digestive symptoms and malnutrition. They thought of a celiac person as extremely skinny, with diarrhea. Now science has shown over 300 symptoms that can be caused by celiac disease, and that celiac people come in all sizes. Many people don’t have the typical celiac symptoms, but do have symptoms that will go away on a gluten-free diet, as their guts heal!

Normal villi and villi flattened by celiac. Image courtesy of Life After Lucky Charms

So how should you decide whether it make sense to get tested? Lots of doctors won’t test unless the “classic” symptoms are present. Conventional wisdom still holds that celiac is a rare childhood disease that always presents as failure to thrive with severe diarrhea! The real data tell a different story.

Over the past 50 years, there has been an explosion in the prevalence of celiac disease! People with symptoms of celiac disease should also get tested. Even if you do not have typical symptoms, testing is worthwhile. 97% of people with celiac disease are undiagnosed and the prevalence is estimated at at least 1 in 133! Among people with a diagnosed family member, the prevalence of celiac disease is estimated at 1 in 22.

Celiac disease is often misdiagnosed as lactose intolerance, IBS, depression, multiple sclerosis, chronic fatigue, fibromyalgia, gallbladder inflammation, infertility, and even hypochondria. Other problems such as ADHD, Hashimoto’s thyroidosis, other thyroid issues, Sjögren’s syndrome, rheumatoid arthritis, type 1 diabetes are also correlated with celiac disease.

So… If you have a family member with celiac disease – get tested! If you have one of these diagnoses and have not been tested for celiac disease – get tested! If you have a lot of symptoms that can’t be explained – get tested!

And one more thing… since once you are gluten-free it becomes impossible to get accurate celiac test results without a gluten challenge, so anyone who is considering a gluten-free diet should get tested for celiac disease, even if they don’t have any symptoms.

So… No Symptoms = No Celiac? Myth: Busted!

Stay tuned for more celiac myths, as well as all the details on how to get good test results!
Update: Check out the other myths we’ve exposed so far:

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6 comments to Celiac Testing Myth #1 – No Symptoms = No Celiac

  • It’s interesting that you mention this… When I first started working with my naturopath, she put me on a naturally gluten free weight loss plan. After a few weeks, I had a blood panel test done…and among other things I had severe anemia, an inability to process protein, gluten intolerance and hypothyroid. That was just the start. We discussed the symptoms and things I experiences as a result of ulcerative proctitis (a minor form of colitis). My cousin’s little girl has Celiac disease. So after much discussion, we basically established that all the signs are definitely pointing toward Celiac disease.

    I have not gotten tested and will not…because of the cost. It is just not affordable for me without health insurance. So it’s a “non-negotiable” for now. However, I can say for a certainty that since I’ve started eating “gluten free” I’ve lost almost 50 pounds since September 1st…and my overall health has improved quite a bit!!!

    I’m looking forward, very much, to reading more of your posts on this topic :) :) Love and hugs from the ocean shores of California, Heather ;)

    • Joy

      I’m glad you are feeling so much better! Without health insurance it is tough. Getting a diagnosis without health insurance can also prevent you from being able to get a decent rate on it in the future as well, due to a preexisting condition. Sad but true :( While obviously I’m biased toward getting testing, if you can stick to the diet and are aware of what other related health conditions to look out for I think that’s good enough.

  • Kristen

    Hi Joy,

    Last August, when my dtr (turned 12 yo in Sept) had her well-check up with an astute NP, she ordered blood work due to her concerns about my dtr’s very low BMI. Ever since she started being able to turn herself like a hand on a clock on a blanket as an infant, we began struggling to get her to gain any significant weight. She has always kept up with all her developmental milestones. She does very well in school with very little effort on her part. She does not have any of digestive symptoms to suggest she is ill. When her blood work came back, NP said “regular panel for CD was negative, but tTg was 9 and said 4 or less = negative. While she said she didn’t imagine that pediatric GI doc would get excited about the tTg level she asked me to take my DTR to a led GI doc just to be sure with the advice to not make any changes to her diet until seen by specialist. GI doc pushed for me to get the endoscopy done on my dtr saying it was only way to confirm neg/pos for CD. The scope results came back completely negative for any damage or hint of CD. He would like to get genetic testing done to determine how often to follow up on my dtr. My dtr gained 5+ lbs from August – November. I’ve read about silent celiac but it seems that even with silent CD, they are implying that there would be intestinal damage noted in scope test. Doc told us that there is no need to change her diet for now. She doesn’t have any of the other conditions listed as causing false positive tTg. So, I’m still wondering why her tTg would even be slightly elevated if she doesn’t have CD. Any thoughts on this would be greatly appreciated :) Kristen

    • Joy

      Hi Kristen,
      In silent celiac there is intestinal damage which can be seen by biopsy. However, biopsies are not perfect, and damage can be patchy. It is also possible that gluten is a problem for your child even without celiac disease. Celiac is not the only way to have a problem with gluten.

      The genetic testing won’t really tell you much… we did it and it was nice to have a piece of paper indicating that gluten could be a problem statistically, but that’s all it is. It is non-invasive and if insurance will cover it, will not hurt :) I always enjoy having as much information as possible.

      In order for a celiac test to eventually be positive (which is, presumably, why the dr wants to do follow up testing each year), your daughter will need to be eating gluten. Another approach, now that you have tried testing, is to go ahead with removing it and see if that makes a difference. Keep logs so that you can go back and review what you have tried.
      -Joy

  • Mo

    Two questions: 1) So I’m anemic (had low Fe results for years) and thus had an endoscopy with 5 biopsies. The doctor saw visual signs of celiac and the biopsy ‘confirmed’ it. Am I reading that there’s some chance I don’t really have celiac? Another place told me DNA is the only sure proof yet above says that isn’t true. 2) I have no other obvious symptoms (maybe a little fatigue, but I’m a very active 60-year-old) so it’s hard to tell if gluten-free is working. How am I supposed to know? Others seem to get diarrhea when even a small amount of gluten sneaks in so they have indications. Again, how will I ever know if I’m truly gluten-free?

    • Joy

      False positive biopsies are very rare. I would definitely consider this a positive test result for celiac, especially with your low iron. Did you have a positive blood test as well? False negative blood tests are fairly common, false positives are not. DNA testing is far from conclusive – DNA testing only tells you if you have risk of developing certain things. I’d be shocked if your doctor told you otherwise.

      As for telling if gluten-free is working, it’s very personal. Some people can tell easily, others don’t have obvious symptoms. Repeating blood tests can show whether you are still reacting, which can tell you if you are being exposed. Repeat biopsies (annually) can show whether healing is taking place or damage is continuing. If damage and reactions continue, you are most likely still being exposed.

      Do the best you can to be gluten-free, and follow up with your doctor! You may also want to make sure you are avoiding processed foods and eating a lot of nourishing whole foods to help with your healing process.

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