CFS

Chronic Fatigue Syndrome and Celiac Disease

I recently did an online continuing medical education activity on Chronic Fatigue Syndrome (CFS).  This is a diagnosis which I never see in my patient population, so I found it interesting to learn about.

According to the presentation, CFS is severe fatigue that persists for at least six months and results in a significant decrease in activity. The fatigue occurs in combination with at least 4 of the following symptoms on a regular basis: joint pain, impaired memory and/or concentration, enlarged lymph nodes in the neck, unrefreshing sleep, sore throat, muscle pains, and headaches.  CFS is a diagnosis of exclusion, which means that other causes of symptoms need to be ruled out, such as an underactive thyroid gland, before a diagnosis can be made.

As soon as I read this info, the first thought that went through my mind was how similar the CFS symptoms seemed to how I would feel if I had to go back to eating gluten again.  Joint pains, “brain fog,” fatigue, and enlarged lymph nodes were all chronic problems which I experienced in the months before my Celiac diagnosis.

The educational activity included 3 case reports of real patients with chronic fatigue syndrome. The third report described a 52 year old woman with Chronic Fatigue Syndrome. She was previously healthy, but developed fatigue and chronic pain following a trip to Asia.  She did have a past medical history of depression, high blood pressure, and environmental allergies.  Her physical exam was normal outside of having some fibromyalgia trigger points (these are areas of the body which are tender when palpated).  The patient had low Vitamin D levels, but her thyroid function, iron levels, and autoimmune screening tests were normal. She was started on Vitamin D supplements and began psychological therapy, with minimal improvement in her chronic fatigue symptoms.  Since her Vitamin D levels remained low, despite supplementation, she was tested for Celiac Disease.  She did have Celiac Disease, and she had an almost total resolution of her symptoms of CFS within 6 weeks of going gluten free.

The bottom line is that you or a loved one have been diagnosed with chronic fatigue syndrome, please make sure that Celiac Disease has been excluded.  I tried to search the medical literature for information linking CFS with non-celiac gluten sensitivity, but in usual fashion, there has been no research looking for a link between the two problems.

References

“A Case Based Approach to Chronic Fatigue Syndrome.” Power Point presentation moderated by Anthony Komaroff, MD, Professor of Medicine, Harvard Medical School. Released April 19, 2013 on http://www.medscape.org/viewarticle/782106?src=wnl_cme_revw.

Centers for Disease Control. Chronic Fatigue Syndrome (CFS). Accessed 5/12/2013. http://www.cdc.gov/cfs/index.html.

Chronic fatigue syndrome: oxidative stress and dietary modifications. Logan ACWong C. Altern Med Rev. 2001 Oct;6 (5):450-9.

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9 thoughts on “Chronic Fatigue Syndrome and Celiac Disease

  1. Patricia Carter

    Sadly, the disease commonly called “Chronic Fatigue Syndrome” and more correctly known as “Myalgic Encephalomyelitis”(M.E.) is not the same thing as celiac disease. Some people who suffer from M.E. also suffer from celiac disease, but some do not. If one suffers from celiac disease and treats it, that can help. However, the two diseases are not the same.

    I have suffered from M.E. for decades. At a doctor’s suggestion in 1996, I stopped ingesting gluten. It had no effect whatsoever on the pain and other symptoms of M.E. Obviously, the disease from which I suffered did not include intolerance to gluten

    M.E. is much more complicated than Celiac Disease, and much more difficult to treat. The cause of M.E. is not known, and the psychiatrist-recommended treatments of Cognitive Behavioral therapy and Graduated Exercise Therapy do more harm than good. People who are severely affected by M.E., as I am, suffer pain 24/7 and sometimes die as a result of the illness. It is devastating.

    Frequently, the information presented to medical professionals at courses such as the one you attended are woefully lacking in veracity. Apparently the Center for Disease Control and the rest of the US government agencies do not want to face the real facts involved in this devastating disease. Instead, they have coined the derogatory name “Chronic Fatigue Syndrome” and refuse to acknowledge the real situation.

    If you would like to learn more about the real facts of M.E., you are welcome to visit http://www.mecfsforums.com. This is a forum for people who suffer from M.E. and their carers, friends and families.

    Patricia

    1. Jess Post author

      Hi Patricia,
      Thank you so much for sharing your experience with Myalgic Encephalomyelitis, as well as providing the link to the M.E. forum. I hope that others who read this will be helped by the information which you have provided. I am sorry to hear about your suffering and pain, and I cannot begin to imagine who frustrating it must be for you to be able to see the lack of awareness, research, etc. about your condition in the medical community.
      I wrote the post to point out one case in which untreated Celiac Disease was the cause of a patient’s chronic fatigue symptoms but was in no way trying to say that all cases of chronic fatigue syndrome are due to gluten ingestion. If I did come across that way, I am sorry for any confusion. And I am happy that you replied. I (and others) will learn about M.E. from what you have shared. Thank you.
      Jess

  2. Sally

    I have had chronic ME for 30 years, and recently had a great recovery, since I began treating the problem as a histamine overload. The theory is that I lack the enzyme that breaks down histamine in the body and so have too much histamine causing havoc in all the systems mediated by histamine. Interestingly that enzyme (DAO) is made in the gut lining. If the gut is severely damaged as in coeliac disease then the enzyme is not made and the symptoms would appear.
    The treatment involves reducing histamine at many points. I eat a low histamine diet, I do not eat foods, preservatives and additives that trigger histamine release (including sulphites) I have controlled bad gut bacteria that manufacture histamine in the intestines from ingested protein. I take H1 and H2 blockers when I get acute symptoms and take big doses of Vitamin C daily (2000mg per day) which is an antihistamine. I think taking B12 helps as well. The chronic symptoms have disappeared on their own.
    See the book “Dealing with Food Allergies” by Janice Vickerstaff Joneja, Canadian immunologist and dietician for a lot more detail.

    1. Jess Post author

      Hi Sally,
      Thanks for much for stopping by and taking the time to write.
      I am in the midst of reading about and researching mast cell activation disorders and disorders of histamine metabolism, so your post is very timely! I am so glad to hear that your symptoms have improved. I am going to write a post about all of this soon, but after learning about MCAD/MCAS, I am convinced that a lot of us who are “super sensitive” Celiacs must also have this going on (histamine overload). Mast cell activation can be triggered by autoimmune conditions, such as Celiac Disease, and I think may explain some of the non-gastrointestinal symptoms and other food intolerances that it seems like more and more of us are experiencing with time. My own intolerances have improved dramatically since starting loratidine twice a day last month.
      I am a strong advocate of probiotics and Vit B12 supplements for all Celiacs. I will look into Vitamin C and definitely read Dr. Joneja’s book as well. Thank you for the reference and info!
      I love that we are able to share info and ideas on here!
      All the best to you…
      Jess

  3. Jillie

    I’ve been plagued with symptoms of CFS for the past six months, and it was only today that I considered gluten intolerance as a possibility. I have few digestive issues, but suffer debilitating exhaustion and brain fog, muscle/joint pain, orthostatic intolerance, everything typical of CFS. However, lately I’ve been having awful heartburn (from low acid I believe), and yesterday I endured terrible stomach pain for 8 hours (almost went to the ER) only to violently vomit up a stomach full of undigested food. It’s been very frustrating.

    I recently got fingerprinted for my state nursing board exams, and I noticed that my fingerprints have horizontal lines all over the pads, which have never been present on previous fingerprints. After researching a bit I learned that some (including Dr. Cheney who is a CFS guru) believe this is attributed to CFS, but that it is also often found in patients with celiac disease. I’ve been on a research binge all day trying to discover if celiac disease could possibly be the cause of my chronic fatigue, and articles like this give me hope that maybe I can recover if it’s actually gluten intolerance in disguise. I plan to start gluten-free immediately to see if it makes a difference; I realize I may actually have CFS but I have nothing to lose! Thank you very much for this post and for assisting my research!

    1. Jess Post author

      Hi Jillie,
      Thanks for your kind words. I truly hope that you start to feel better.
      If you do decide to do a trial of being GF, I recommend that you avoid all gluten as well as foods with potential gluten contamination. There are a ton of processed foods marketed as being GF which are made on shared equipment and can still contain 10 or 15 ppm of gluten (and be labeled as GF since they have less than 20 ppm). There has been increasing research that those with neurologic symptoms related to non-celiac gluten sensitivity can react to very, very small amounts of gluten (being even more sensitive than those with Celiac Disease).
      Please let me know if you have additional questions and all the best to you on your journey (and good luck on your nursing exams!)
      Jess

      1. Jillie

        Thank you for the advice! Do you have any recommendations for learning which foods may have been subject to cross-contamination? I don’t eat many processed foods, but those like peanut butter, corn chips, black beans, brown rice, almonds, and even “gluten free” vitamins all jump to mind as we have no idea where they are packaged! Thank you again for the help!!

        1. Jess Post author

          Hi Jillie,
          I apologize for the late reply. I usually try to respond within 2-3 days of a comment, but for some reason your comment did not pop up in my queue!
          I am assuming that you have already gone GF at this point, but to answer your question, a lot of nuts and beans are processed on shared equipment. I usually order my nuts on nuts.com because their nuts are certified GF and not processed on shared equipment. I rinse my beans carefully and have had the best luck with Arrowhead Mills beans.
          My “go to” tortilla chips ate Xochitl and the ones made by Food Should Taste Good. Early on in my GF life I got very sick from Frito Lay “no gluten ingredients” Tostitos because they were made on shared equipment (which was not disclosed on the packaging). I have also gotten sick from several of Trader Joe’s “no gluten ingredients” items which are made on shared equipment. My caveat is that I am one of the super sensitive Celiacs.
          Good luck and please write if you have any additional questions. I hope that you are feeling better!
          Jess

  4. Michelle Curtis

    Hi Patricia,

    You’re definitely onto something here, and I believe that people are not only sometimes misdiagnosed, but that the two can go hand in hand. I have suffered with CFIDS/ME and Fibromyalgia for several years now. I do not have Celiac disease, but I am extremely sensitive to gluten, which can be nearly as damaging to the central nervous system and I’m certain it has contributed to the severity of my illness, if not entirely to the disease itself. In the three months since I have eliminated gluten from my diet, my cognitive and mental faculties have greatly improved, my energy levels have increased massively, my neuropathy and parasthesias have both improved, and my pain levels in general are way down. I went from being stuck in bed or a recliner 20 hours a day to being able to take one mile walks, hike short distances, do home improvement projects and go bowling. I have lost 17 pounds (I have been unable to lose weight for 3 years no matter what I tried) and I no longer need the medications I was on. My mental faculties had shrunk to the point where I was losing the ability to do math in my head and was unable to form cogent sentences. My husband was so concerned about my ability to reason and care for myself, he was looking for in home care. Then I quit eating gluten and started on a powerful anti-oxidant called glutathione and my whole world changed. I was given a second lease on life.

    I was astounded and somewhat boggled by these changes until I began reading Wheat Brain by Dr. Perlmutter, who does an excellent job of explaining and presenting research on the effects of gluten and carbohydrates on the brain. He believes it is the reason for the spike in all neurological disorders (which is what ME is; it’s a neuroimmune disorder) and that it either causes them or exacerbates them, depending on the severity of the sensitivity. I highly recommend this book for anyone who’s interested in gluten and neurological disorders.

    In many cases, there is a connection with gluten and this terrible illness and I’m happy to see that intelligent people like yourself are making and sharing these important connections.

    Best of luck and good health to you!
    Michelle

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