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
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
bone or joint pain
bone loss or osteoporosis
depression or anxiety
tingling numbness in the hands and feet
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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  1. I’m just now reading a book called Healthier without Wheat, and according to the author, Celiac Disease is a very specific form of gluten intolerance. You can test negative for celiac and still be very very ill from gluten intolerance. It seems like the best test to get is one that measures gliadan – doctors often ignore a positive result on this test if the celiac one comes back negative, even though it means there is a gluten intolerance other than celiac. It seems gluten intolerance could be quite common and can lead to all kinds of illnesses and symptoms, including fibromyalgia and fatigue. I think a lot of people need to know the information that just because you don’t have celiac doesn’t mean that you are not still gluten intolerant!

  2. I have dealt with digestive issure my whole adult life. Also have had migraines just as long. I’ve been diagnosed with Crohns, IBS, Fibromyalgia, auto-immune and vitamin D deficiency. Not all at the same time but ….as of now have not been taken serious enough to be on any kind of medication except prilosec. I have all over body pain and I am tired all day. Unfortunately, I also have insomnia and sleep apnea…..so all of these together make me sound like a hypochondriac. What do I do…SO many possibilities of what could be wrong.

  3. Many of the symptoms mentioned in your post and comments are actually symptoms of crohns disease. As I’m sure you know that crohns and other ibs and ibd diseass are so called autoimmune diseases, but many are unaware that yeast infection/candida albicans can also mimic many of the autoimmune diseases including celiac disease. It’s really all about the gut/intestinal tract. Many of our problems start with antibiotic use which destroys the good bacteria along with the bad. The good bacteria keeps yeast in check but when the friendly flora is weakned the yeast has a chance to get a foot hold in th intestinal tract and wreak havoc. Read the book “Th Fungus Link” there you will find that th authors Doug Kaufman and Dr. David Holland describe how yeast acts on the human digestive tract and how it may b the cause of, not only celiac disease, but Lupus, MS, Arthritis and even Lukemia.

  4. Very interesting article – thanks.

    A year ago, my 10 year old daughter & 12 year old son were both ill, with very similar symptoms. My daugher was diagnosed with coeliac disease, & my son with glandular fever (his coeliac blood test was negative, & this was not investigated any further). My daughter is on a gluten free diet, is MUCH improved & almost back to 100% fitness. My son has gone down & down, he is still poorly, & the glandular fever is likely to be reclassified as ME/CFS, now that it has lasted more than a year.

    My 4 year old daughter now has similar symptoms, coeliac blood test was negative, but in spite of this both the consultant & I think she is coeliac, & she has been booked in for a biopsy in early 2011. What I wonder is, does my son actually have coeliac disease also??

    Thanks again for your interesting & thought provoking article.

  5. I suspect that i have been misdiagnosed. I have had two different blood tests as my mother has coeliac disease and i have exactly the same symptoms. Both test results were negative and my dr suggested that my A – levels were the cause of my issues and that i was simply stressed. However, i do not understand how the stress of daily hassles and A – levels would effect how my body reacts to different foods. I’m finding it hard to stay awake and as soon as my lessons end all i can think about it rushing home to have a nap before starting homework.
    Eating gluten- free foods has no painful consequence, but if i eat it i soon know about it with a swollen stomach full of gas and burning pains(quite like hunger pains) and a small section on one of my fingers burns and the skin turns red and itchy. What i find very coincidental is that my mother has exactly the same skin reaction in exactly the same place on exactly the same finger.
    I have just this week been to hospital for a consultation and he has insisted that my symptoms lead to either stress or CFS and i have been scheduled for a biopsy.
    I am quickly deteriorating and can’t keep living with this condition as I am starting uni at the end of this year. The dr has told me i have to keep eating gluten up until my biopsy so that my allergy is easier to spot however i dont think he quite took into account how bad my condition is
    I am very thankful for all of your comments and stories, they have given me great reassurance and hope.
    I hope all of you are coping well, best wishes

  6. robert christ says:

    I’ve had cfs for 14 years I always attributed it to mold sensitivity and was too narrow minded to consider food allergies. The last month I have been on the gluten free diet as well as milk free and milk free products and also no nuts. The difference in my energy levels is astounding, my stools are starting to look normal after 14 years of diarrhea. I strongly urge anyone with cfs like symptoms to try the diet for a few weeks it’s not an easy diet but there is plenty of info on the net. I would stop milk and milk containing products also. While I was so focused on mold others might be focused on just the diet aspect. Please make sure you don’t have any serious mold problems in your house or it might mask the benefits you get from the diet!

  7. There are times that my father got over fatigue every time he’s going home from work. And many times I noticed that he also have insomnia, and the only thing he does is drinking alcohol just to go asleep. And I don’t know what he did because now he’s already fine. Thanks for sharing this article and also those who comments. Thanks.

  8. I started suffering from allergies – and colic – at 3 days old, when I was put on to Infant Formula. Then there was extreme hay fever, thrush, anaemia, extraordinary rashes that no medical person could explain, diarrhoea over a prolonged time, indigestion, flatulence, peripheral neuropathy, rheumatoid arthritis, to mention just some of the maladies. No doctor ever suggested coeliac disease across the years, presumably because I never suffered from mouth ulcers/canker sores. I had diagnoses of irritable bowel syndrome, costo chondritis, endometriosis, stomach ulcers and the best diagnosis of all was – “What a woman like you needs – a woman who is so focussed on her health – is a good husband and a baby”! I’m a coeliac!!!
    Luckily, after 25 years of trying to discover the reason for my health difficulties, I eventually found a Gastroenterologist who actually LISTENED to me and tested me for coeliac disease. The test came back negative but this could have been because I had worked out, over the years, some of the foods that upset me: biscuits, cakes, sweets and I had cut those out so probably my gluten intake wasn’t huge by then.
    When I went on a gluten-free diet the improvement was about 60 per cent and then I could see clearly what else it was that was making me ill. Yeast. If only more websites and advice sites explained the connection between coeliac disease and candida overgrowth, initiated usually by prescribing antibiotics across the years.
    On a gluten-free and yeast-free (and that means no alcohol/cheese/fermented substances like vinegar either) diet, my health has improved by leaps and bounds! Try reading Bruce Semon’s book ‘An Extraordinary Power To Heal’, which explains how yeast is poisoning so many of us and he explains, too, how to remove these substances from your diet. One of the ingredients that starts me vomiting is whey, which is put into so many foods now (like commercial chocolate) and this substance is the main ingredient of Infant Formula!
    Unfortunately I had to watch my mother die from the effects of coeliac disease and no-one ever diagnosed her. I can see clearly from her medical notes that she was a coeliac and she developed Non-Hodgkins Lymphoma – often the sad outcome for undiagnosed coeliacs.
    Thanks for the website, very informative.

  9. Anytime my nephew eats carbs (we hadn’t ever heard of Celiac before) he gets headaches, naussea, lightheaded very tired and needs to pretty much lie down for up to 2-3 hours before he is feeling better.

    He went to the Doctor and they said nothing was wrong. Are these symptoms that you have seen before related to this? It also happens very bad when we go to Chinese restaraunts, we were almot thinking it could be MSM?

  10. If you are working everyday, you are always prone to fatigue especially when you get almost no breaks at all. One thing that you should do would be to let yourself relax in one way or another. Have a hobby that you can spend a bit of your time with. This helps releases the stress that you may have had inside you. it can be a weekend hobby or something else, what’s important is that you can feel well while undergoing it. Some would prefer to go through hiking at weekends or even golfing, it really depends on your preference and on how much time you are willing to spend with them.

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