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  • Jefferson Adams
    Jefferson Adams

    Does Celiac Diagnosis Take Longer in People Without Gastrointestinal Symptoms?

    Reviewed and edited by a celiac disease expert.

      Do doctors take longer to diagnose celiac disease in people without symptoms than they do for people with symptoms? Yes, much longer. That needs to change.


    Caption: Why does it take so long for doctors to diagnose celiac disease in patients with no symptoms? Photo: Richard-G

    Celiac.com 03/08/2018 - A team of researchers recently set out to study delays in diagnosing patients who have biopsy-proven celiac disease with gastrointestinal complaints, compared to those without non-gastrointestinal complaints.

    The research team included Marco A. Paez, MD, Anna Maria Gramelspacher, MD, James Sinacore, PhD, Laura Winterfield, MD, and Mukund Venu, MD. They are variously affiliated with the Division of Gastroenterology, Department of Medicine, Howard College of Medicine, Washington, DC; the Department of Medicine, the Department of Public Health Sciences, the Division of Gastroenterology, and the Department of Medicine at Loyola University Medical Center in Maywood, Illinois.

    The research team first conducted a medical chart review of 687 adult patients diagnosed with celiac disease. All patients they studied had biopsy-proven celiac disease and were grouped according to presence or absence of gastrointestinal symptoms before diagnosis. The team found 101 biopsy-proven celiac patients that met their study criteria. The groups were roughly equal in size, with 52 patients showing gastrointestinal symptoms before diagnosis, and 49 with no gastrointestinal symptoms.

    The results for the groups were starkly different. Statistical analysis revealed an average diagnosis delay of 2.3 months for the group with gastrointestinal symptoms, while the group that showed no symptoms showed an average delay of 42 months. That’s a difference of nearly 3½ years.

    Nearly half of the patients with non-gastrointestinal symptoms had abnormal thyroid-stimulating hormone, as opposed to 15.5% in the gastrointestinal symptom group (P = .004). Nearly 70% of patients without gastrointestinal symptoms had anemia, compared with just 11.5% of the group with gastrointestinal symptoms.

    Also, nearly 70% of patients in the non-gastrointestinal symptom group showed abnormal bone density scans, compared with 41% in the gastrointestinal symptom group. The team saw no sex differences on chi-squared analysis between the 2 groups.

    Although there is growing awareness of celiac disease, the delay in diagnosis for patients without gastrointestinal symptoms remains prolonged, with an average delay of 3.5 years for celiac diagnosis, compared with just over two months for those with symptoms.

    Clearly, more needs to be done with regard to diagnosing celiac disease in patients who show no symptoms. On the upside, researchers are currently working on ways to better diagnose celiac disease via faster, more accurate tests, even in patients who have already gone gluten-free.

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    My first diagnosis was Multiple Sclerosis

    Then my adrenal glands failed

    They found Collegenic Colitis that gave a Celiac's diagnosis.

    i NEVER had a gut symptom!!!!!!!!!!!!!!!!!!!!!!!!!

    ALL healed from a gluten free diet and cannabis

     

    No more daily life saving meds (after 10 yrs of it) and NO more brain lesions!!!!!!!!!

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    I've never been tested for Celiac but I was having consistent back, knee and wrist pains for decades that all went away and never returned once I went gluten-free about 6 years ago. Also less headaches, a lot less advil and less anxiety. 

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    I am 62 and was first tested 2 years ago. I am positive for antibodies, GI bx changes and one genetic marker. No GI symptoms-possibly because I tend to follow a lower carb diet/minimal foods with gluten. HOWEVER, I have had periodontal disease since my 30's. I am also Hypothyroid. 

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    After 8+ years of pain, mood disorders, and peripheral neuropathy  (along with hypothyroidism) I eventually received a diagnosis of fibromyalgia. It took me doing a food elimination diet at the recommendation of a coworker to discover that my symptoms went away after going gluten free. Only then did my primary care doc refer me to a GE who had me do a gluten challenge and both my biopsy and blood-work confirmed celiac. People definitely need to be more aware of the range of symptoms. I already have complications due to untreated celiac (hopefully they will heal eventually) and I still get people telling me I can't have celiac because I'm normal weight.

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    I am still waiting for a diagnosis six years later. I'm absolutely sure I have dermatitis herpetiformis and twice now I have been told I have flea bites by dermatologists who have taken biopsies (incorrectly) of the lesions. I refuse to go back on gluten to get a small intestine biopsy. There doesn't seem to be any other option yet. The DH biopsy is very specialized and no one in my area seems to know how to do them exactly right. 

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    Couldn't  agree more. My husband was 6 years trying to get doctors to listen to his symptoms finally celiac was found through bloodwork from a biodentical hormone doctor, antibody testing then biopsy to confirm. He went gluten free and starch free has been good ever since.  It took about 4 yrs before he really started to feel good again. Even started to grow back his bone mass with the help of a natroupath and I V therapies  and peptide injections he took for 2 months.  Going gluten free was just the start of his recovery without other treatments he would not be were he is today. Gluten does so much damage to the body when not found early. Doctors really need to pay much more attention to this issue because gluten damage can effect some many areas of the body not just stomach and bowel.  Brain function is effected but this usually is overlooked too.  So many things are overlooked in this issue it's no wonder people have such a hard time being diagnosed.  I really think with all that I've read and seen with my husband and his journey that this should be a standard blood test for everyone. I am gluten free now because of my knowledge of this disease and what it has put my husband through. I feel so much better health wise you couldn't pay me to put another drop of it in my mouth!

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  • About Me

    Jefferson Adams is Celiac.com's senior writer and Digital Content Director. He earned his B.A. and M.F.A. at Arizona State University, and has authored more than 2,000 articles on celiac disease. His coursework includes studies in science, scientific methodology, biology, anatomy, medicine, logic, and advanced research. He previously served as SF Health News Examiner for Examiner.com, and devised health and medical content for Sharecare.com. Jefferson has spoken about celiac disease to the media, including an appearance on the KQED radio show Forum, and is the editor of the book "Cereal Killers" by Scott Adams and Ron Hoggan, Ed.D.

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