When you have fibromyalgia (FMS) or chronic fatigue syndrome (CFS or ME/CFS), it's common to have intestinal problems. They're not symptoms, though - they come from overlapping conditions that need to be diagnosed and treated, and leaving them untreated can make your other symptoms worse or lead to serious problems.
I posted the other day about irritable bowel syndrome (IBS), which is what we usually assume is going on when we get unpleasant gastrointestinal symptoms. However, we're also prone to food allergies/sensitivities and other food-related problems, including celiac disease. You may have heard that celiac is an allergy to wheat and gluten. Actually, it's not an allergy but an autoimmune disease that can do serious damage to your small intestine and have potentially fatal long-term effects.
I'm going through the rather long diagnostic process for celiac right now. I had a blood test, which was negative - but that's inconclusive. Next, I'll likely have an upper endoscopy to check for certain signs of celiac, and if they're there I'll need a biopsy to confirm the diagnosis. Not a fun process, to be sure, but at least there IS a reliable diagnostic process, right?
Meanwhile, I'm on a gluten-free diet and the symptoms that showed up a couple of months ago have gone away. My FMS symptoms are a little worse than they were before this hit, which I'm guessing is a consequence of the upset to my system and possibly because of malabsorption problems that celiac can cause.
In my case, I'm pretty sure celiac came on suddenly, so I don't think it played into my developing FMS or struggling to control it. In some cases, however, celiac can be undetected for years and some people believe it contributes to the onset of FMS and ME/CFS. Some doctors even say some people with celiac are misdiagnosed as having FMS or ME/CFS, and it's frequently mistaken for IBS as well. One of my symptoms was extreme fatigue and the inability to stay awake, which are ME/CFS symptoms. Some people think narcolepsy is actually linked to celiac, but that hasn't been proven.
It's also possible to have an allergy or sensitivity to wheat/gluten that's not celiac, but can still cause plenty of symptoms and make your overall health worse.
Have you been tested for celiac disease? Has a gluten-free diet helped you, even if you don't have celiac? Have you tried an elimination diet to check for food sensitivities? Share your experiences by leaving a comment below!
Also See: Is Your IBS Really Celiac Disease?, from Nancy Lapid, About.com Guide to Celiac Disease.
Photo © Jodie Coston/Getty Images
If you’re going to have an endoscopy to check for celiac disease, you need to remain on a gluten-containing diet. Going gluten-free before the biopsies are taken can cause a false negative, because it allows the intestine to heal.
To build on what Julie wrote: the blood tests should also be done on a gluten-containing diets. They measure your response to gluten; without the gluten in the diet, they have nothing to measure.
Even if you test negative for celiac disease, you can still be gluten sensitive. About 1% of the population has celiac disease. A growing number of doctors are recognizing that many more people have non-celiac gluten sensitivity. Estimates range from 10-30% of the population have problems with gluten. Enterolab testing is one method to test for non-celiac gluten sensitivity.
I agree with Julie’s comment. Consuming a gluten-free diet before testing for Celiac Disease can cause a false negative. Ask your Gastroenterologist about genetic testing. Dr. Scot Lewey’s (Gastroenterologist) article “Celiac Disease Genetics” at http://www.celiac.com/articles/21628 may be helpful. He and his wife live gluten-free.
A scope is helpful to see how well the bowel is healing and still may be able to diagnose Celiac disease (even eating gluten-free). It can take months for the bowel to heal completely. As well, it is common for people to accidentally eat gluten when they are new to eating gluten-free so it is possible that there may still be visible damage to the small bowel. Consult your Gastroenterologist about the best approach for your situation.
Take care and good luck,
shellystuart.ca
Thanks for all the info! I did stay on gluten until the blood test, as hard as it was. When I couldn’t get in to even see the GI doc for 6 weeks, I went GF because otherwise I couldn’t stay awake and couldn’t function at all.
I very bummed that I’ll have to go back on gluten before the endoscopy, because I know what’s in store for me when I do. My plan is to stock up on all the things I’m missing right now and eat the heck out of them for a couple of weeks before the procedure.
My GI appointment is scheduled for April 24. If my posts become irregular and riddled with typos just before then, you’ll know why!
I had severe chronic fatigue syndrome with fms, for 27 years. My life became more and more constrained and limited and I figured I was going to die slowly in pain and though sad about it, actually just accepted it as inevitable. Someone suggested I try going off wheat and gluten products. I did, not thinking it would likely help much. The muscle pain, within 2 days reduced by at least 80%. It’s been 2 months and my life is completely changed. I hiked up and down 4 miles of mountain trails with my dog today. This is nothing short of a biblical miracle. I think I had celiac disease either as a predominant or aggravating condition. I suggest everyone with CFIDS or FMS just quit eating gluten products for a week to see how they feel. It may not be necessary to see a lot of specialists. The other nice thing is I don’t have to eat 3,000 calories a day to maintain my weight. I can get by easily on 2,000 calories or less. Everybody I know is astonished at the difference.
Hi I think I have Coeliac disease as it showed up positive on my blood test, and I think I got chronic fatigue syndrome from eating gluten all my life because 7 months ago I got CFS. I haven’t gone completely gluten free just yet as I need one more test to prove I have the disease, but if I have I am going to stop eating gluten and then maybe my chronic fatigue syndrome will go away. Lets hope.
I was diagnosed with Celiac 10 years ago and still had fatigue after changing my diet… I had re-accuring illnesses every 5-6 weeks. I was introduced to glyco-nutrient suppliments 6 years ago and all my symptoms seem to disappear. I felt good for 4-5 years until my family grew bigger and the money for suppliments needed to be used for food…. my symptoms of chronic fatigue have come back (even with the gluten free diet). I am reading a book on M.E. and can tick all the symptoms. I am now looking for answers.