Celiac Disease Can Be Misdiagnosed As ME/CFS

Back a few years ago when I was receiving treatment from the Fibro & Fatigue Centers, they did a blood test to determine what foods my body is allergic to.  The test was called a LEAP test and they checked for allergies in all of the food groups and also food preservatives and colorings.  When I received my results, I wasn’t surprised to see that practically every food I like was on the allergic list, including wheat and wheat products. 

I had a friend whose mother suffered for years from Celiac Disease before she was ever diagnosed.  Back when this woman and I were working together and talking on a daily basis, she commented that my symptoms were similar to what her mother went through with Celiac Disease.  This was before I had the LEAP test and I told her that I had CFS & Fibromyalgia.  I have a SIL who was diagnosed with Celiac Disease and I didn’t suffer like she did so I didn’t think this  applied to me.  Then a few weeks after our conversation I had a major CFS flare that had me bedridden for quite a while and she called and convinced me that I needed to see a doctor who could test me for Celiac Disease.  I went to my appointment, had the blood test, it came back negative and I never gave it another thought until I had the LEAP test.  The blood test is used to indicate whether there is a high level of anti-tissue transglutaminase antibodies (tTGA) or anti-endomysium antibodies (EMA).

I’ve since been told that the blood test given to check for Celiac Disease does not always correctly diagnose the illness and the doctor should have done an intestinal biopsy based on my symptoms alone. In Celiac patients, there is damage to the villi in the small intestine.

Celiac Disease can be difficult to diagnose because it mimics symptoms of other chronic illnesses and can be confused with IBS, IBD, anemia, intestinal infections, diverticulitis, and ME/CFS.   The National Digestive Diseases Information Clearinghouse (NDDIC) describes Celiac Disease as:

…both a disease of malabsorption—meaning nutrients are not absorbed properly—and an abnormal immune reaction to gluten. Celiac disease is also known as celiac sprue, nontropical sprue, and gluten-sensitive enteropathy. Celiac disease is genetic, meaning it runs in families. Sometimes the disease is triggered—or becomes active for the first time—after surgery, pregnancy, childbirth, viral infection, or severe emotional stress.

Symptoms of celiac disease vary from person to person. Symptoms may occur in the digestive system or in other parts of the body. Digestive symptoms are more common in infants and young children and may include

abdominal bloating and pain
chronic diarrhea
vomiting
constipation
pale, foul-smelling, or fatty stool
weight loss

Irritability is another common symptom in children. Malabsorption of nutrients during the years when nutrition is critical to a child’s normal growth and development can result in other problems such as failure to thrive in infants, delayed growth and short stature, delayed puberty, and dental enamel defects of the permanent teeth.

Adults are less likely to have digestive symptoms and may instead have one or more of the following:

unexplained iron-deficiency anemia
fatigue
bone or joint pain
arthritis
bone loss or osteoporosis
depression or anxiety
tingling numbness in the hands and feet
seizures
missed menstrual periods
infertility or recurrent miscarriage
canker sores inside the mouth
an itchy skin rash called dermatitis herpetiformis

People with celiac disease may have no symptoms but can still develop complications of the disease over time. Long-term complications include malnutrition—which can lead to anemia, osteoporosis, and miscarriage, among other problems—liver diseases, and cancers of the intestine.

So if Celiac Disease can be misdiagnosed as ME/CFS, I wonder how many of us actually have Celiac Disease and if we should all be tested for it?  I guess people can have a sensitivity to wheat, like my LEAP test results show, but not have a gluten intolerance?  A study was published in the Journal of Clinical Pathology back in 2001 that stated:

In general, it remains true that although a wide range of physical illnesses can be misdiagnosed as CFS (see Wessely et al for review [4]), in practice this is uncommon. In particular, if basic physical examination, investigations, and history are unremarkable, misdiagnosis of CFS and other physical illnesses is very unusual. Until now there have only been two reports concerning three cases of CD being misdiagnosed as CFS. [5,6]

However, there is now evidence from primary care of a surprisingly high frequency of unsuspected positive EMA tests in people with non-specific symptoms and a suggestion that a higher index of suspicion is needed when assessing such patients. [2] We now extend that observation to our CFS clinic.  Indeed, given our prevalence of 2%, and the fact that there is a treatment for CD, we now suggest that screening for CD should be added to the relatively short list of mandatory investigations in suspected cases of CFS.

Please post comments and let us know if:

• You have both ME/CFS & Celiac Disease
• Your Celiac Disease was misdiagnosed as ME/CFS
• Your blood tests did not show positive results for CD but an intestinal biopsy did. 

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