The ME/CFS Ghost » 22 October 2014

Daily Archives: 22 October 2014

Coeliac Disease, ME and me

Coeliac Disease and ME

Recently I started seeing a new doctor and she wanted to test me for Coeliac Disease in relation to the plethora of symptoms which have been worse lately. This is not the first time a doctor has brought up CD. Back in 2003 when I was in the middle of my journey to get a diagnosis for the bizarre illness that had taken over my life, I was tested for Coeliac Disease. The first part of the test was (and still is) a blood test and then a biopsy of the small intestine. My blood test came back as positive so I also had a gastroscopy and endoscopy; at that time I had so many digestive symptoms and in fact my ME symptoms were triggered by a viral infection. The biopsy showed inflammation but I did not test positive for Coeliac Disease. At that time I was not very medical savvy, meaning, I had complete trust in the doctors and did little to no research myself. It was not until many years later that I realised the tests I had in 2003 were useless because the doctor who had suggested Coeliac Disease had also suggested I go on a gluten free diet. So I had been gluten free for several months when I took the tests.

What is Coeliac Disease?

Before I go back to my CD journey, I just want to take a moment and briefly explain what Coeliac Disease is. Coeliac UK states that possible symptoms may include:

  • severe or occasional diarrhoea, excessive wind and/or constipation
  • persistent or unexplained gastrointestinal symptoms, such as nausea and vomiting
  • recurrent stomach pain, cramping or bloating
  • any combination of iron, vitamin B12 or folic acid deficiency
  • anaemia
  • tiredness and/or headaches
  • sudden or unexpected weight loss (but not in all cases)
  • mouth ulcers
  • hair loss (alopecia)
  • skin rash (dermatitis herpetiformis)
  • tooth enamel problems
  • depression
  • infertility
  • liver abnormalities
  • repeated miscarriages
  • joint and/or bone pain
  • neurological (nerve) problems such as ataxia (poor muscle coordination) and neuropathy (numbness and tingling in the hands and feet)
  • amenorrhoea (lack of periods in women)

I’ve experienced all but a few of these symptoms for many years now. What causes them for people that have Coeliac Disease is a protein called gluten which is found in grains such as wheat, rye and barley. Coeliac Disease is not an allergic reaction, but an autoimmune condition, so gluten causes the immune system to attack healthy tissue, and damage is caused to the small intestine.

Coeliac Disease and ME

If you have been diagnosed with ME, you will notice that many of the symptoms on that list are commonly found with ME sufferers too. I think that too many ME sufferers just have every new symptom that comes up brushed off as being ME related, but just because you have one illness does not mean you cannot have another. In fact, from what I’ve been reading online, there are many people that believe there is a relation between ME and CD. I have also seen that some people have fought so hard to come to terms with ME and to have this illness recognised by friends and family, they themselves are unwilling to add another illness to the list. This may be because it just seems like too much work or because they believe it is an either/or situation; they either have ME or they have CD. I don’t believe it is an either/or situation. Of course, in some cases it may be, but I know for me it is not. I went gluten free back in 2003, and it really helped some of my symptoms, but my ME symptoms continued. In fact my health continued to worsen for the next few years, although I was back on gluten by 2005. I will be writing a separate post at a later date about the gluten-free side of things, but for now I just want to say that I am more than happy to investigate Coeliac.

As ME sufferers, our bodies are under so much stress and we go through so much. It is actually good news when some of the symptoms can be explained by some other illness, especially when there is a treatment for it. I will gladly put out the fires that I can, and hopefully that will also help the ME side of things.

Coeliac Disease and me

A few weeks ago I agreed to have the blood work to test for CD. But for days afterwards I was so anxious. When I feel that way, I try to follow the thread of my emotions and look at what is causing the anxiety. I realised it was the idea of having to go through the gastroscopy again. In fact I even told my doctor that I was extremely traumatised by the last time I had one and she said she could not promise I would not have to have one again. My fear of the procedure stems from a bad experience with a dentist many years ago and that is what caused me to write the post Fear of Dentists.

I thought about what I wanted to do and decided I would no way go through with the gastroscopy, but I would instead just go on a gluten free diet. I wish I had stayed gluten free when I tried it a decade ago, but in 2005 I had to go away to try alternative treatments and it was not possible to eat a diet free from gluten. I know eliminating gluten before has helped with the gastro-symptoms at the very least, and that’s good enough for me.

I would like to say that if you think you have Coeliac Disease, please speak to your doctor before you do what I am doing. I say this because you may have something else entirely. In my case, this is my second time around and I know the effect a gluten free diet will have on me. Also, I see my GP regularly so my health is under constant supervision. If the biopsy of my small intestine had come back as testing positive for Coeliac Disease, I would have gone on a gluten free diet, but even if it did not come back as positive, I probably would have still gone GF, because I would have been working on the idea that at the very least I have a gluten intolerance.

I would be interested to hear from anyone who has both ME/CFS and Coeliac Disease, whether diagnosed, or undiagnosed gluten intolerance.

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