Hi everyone. I've only just picked up on this thread as I haven't been active for a while. I'll be shortly heading to the store to pick up some nettle tea to test out...
Inflammation is definitely a problem for me. Before I went gluten free I had no celiac antibodies, but did have a very high ESR (100), and a few other blood abnormalities including a highish TSH. Going gluten free brought the ESR and TSH down to decent levels, and the worst of my symptoms (frequent episodes of migraine, vomiting and D, skin rashes, itchy and burning skin) improved, some quickly and some gradually over about 6 months. However I did still have lingering abdominal pain, head and muscle aches, fatigue and brain fog. An endoscopy after 6 months on the diet confirmed ongoing gut inflammation.
8 months further on with these dragging symptoms, despite eating a strict diet mainly free of unprocessed foods I finally understood a way to manage the problems (although I don't really understand why this should be so). I realised that the brain fog was caused by the paracetamol and codiene painkillers I was frequently using to control the head and body pains (I had not been taking more than the allowed daily dose, but did take them on most days). My brain fog cleared within about two weeks of stopping the medication, and the headaches and body pains also reduced significantly - a sure sign of their overuse!
Once that was out of the way, I could see that the headaches or body aches started only if I ate grains, with rice being the major culprit. Going grain free (with a little corn now and again) has stopped the headaches and body pains immediately, my gut was more comfortable and behaved better, and within a few weeks my energy levels soared. Evidence of finally getting the remaining inflammation under control.
Finally, for me, the inflammation may be allergy-related in some way. Since ditching the painkillers and the rice, I have discovered that any headache or gut pain is alleviated by taking an anti-histamine. It doesn't seem to matter which one, I take either Zantac (and H2) or Piriton (an H1). They both work extremely well for me. I would be really interested to hear if this works for anyone else.
Thanks for reading. I'm now off to buy some nettle tea!
I found the worst of the forgetfulness and inability to focus improved within a couple of months. I can now shower in the morning without having to really think hard about whether I have just rinsed shampoo or conditioner out of my hair. However, after nearly a year, I am still forgetful about shopping lists etc, and it is still a struggle to focus properly at work.
It might just take more time than you think. When I saw a rheumatologist I think he was minded to diagnose fibromyalgia, as I leapt in the air when he tested the fibro sensitive points, all of them. I think he saw that I was underwhelmed by this idea. Ditto IBS with a gastroenterologist. Apparently I don't have celiac....They were both right that I dislike both these diagnoses in anyone, as they are just a label to show that doctors understand that there is a significant problem, but don't know what is causing it, or suggest a decent treatment. If I hadn't had the confidence to insist that gluten was quite likely to be the enemy thanks to a strong familial history of confirmed celiacs, I would still be eating gluten, still be sick, still using expensive healthcare resources, and probably wouldn't be working either. Anyway, both doctors were happy to accept that I am gluten sensitive as my inflammatory markers and some minor antibody tests and nutritional deficiencies normalised on going gluten free and my response was confirmed by elimination/challenge diet.
You might also want to look at Irishheart's content as she deals with major neurological pain, but is improving slowly.
Love2travel - I admire your attitude so much. It takes great strength of mind to push severe pain to one side and get on with living life to the full. I am really sorry to hear that you still haven't experienced any improvement in your pain. For me, gluten seemed to cause systemic inflammation which then squeezed any weak or damaged areas of my body (I have some dodgy discs and had widespread soft tissue damage to my neck and spine after a car accident some years ago). Removing the gluten reduced the inflammation, which in turn reduced the pain hugely. Improving the flexibility of my spine and the strength of my core neck, spinal and abdominal muscles via therapist-guided pilates also made a massive difference. I had to stop my "maintenance" routine when I fell ill (I was so sore and stiff, it just stopped working!), and haven't got back to it yet, but I hope to so soon, to complete my recovery.
I have a colleague who suffers in a similar way to you, and who has a similar tough "mind over matter" attitude to her pain. She smiles and jokes while walking slowly and stiffly with a cane. You can see the pain in her eyes, but she ignores it. I do wonder if removing gluten from her diet might help reduce her pain at least a little, particularly as she has a son who seems to have classic celiac symptoms. I have talked to her about the effect of gluten on my less severe pain, and she is interested, but hasn't as yet pursued it.
I met a young girl and her mother at a youth event recently. The girl had started using a wheelchair 6 months earlier, and the mother was frantic trying to find out why. Her doctors (from a major hospital) were clueless. Apparently she could just about move her legs, but it was extremely painful for her to do so. I asked her Mum if she had been tested for celiac. The Mum said no, she hadn't thought her symptoms could be celiac-related, but that her other daughter had celiac...... Neither the Mum nor the girl's doctors seemed to have any idea that gluten could cause anything other than abdominal symptoms. I gave her references to a few medical papers to show the doctors, to try to hurry along an appropriate referral for investigation. Apparently she is following them up.
Penny - I lived with chronic fatigue and low grade pain, mainly in my back, for 25 years, following the sudden onset of what I now know to be celiac-like symptoms when I was a student. The doctor called it post viral fatigue, but with hindsight I doubt it was that. Over the years the pain worsened and I gradually developed chronic headache/migraines, severe neck, shoulder and back and hip pain.
18 months ago I developed systemic inflammation and I felt so stiff I could hardly move. I felt like the proverbial michelin man, unable to move in a large inflexible body suit. I had other symptoms too. I was so tired and ill-feeling I was struggling severely at work. I could hardly walk anywhere, let alone go to the gym, and was doing the bare minimum to get by at home.
I went gluten free nearly a year ago, and the worst of the pain disappeared quite quickly. The stiffness resolved, the migraines, neck, shoulder, back and hip pain went away, the tingly or sometimes numb arms and fingers normalised, and the generalised body aches reduced. The fatigue didn't go though. In fact it got much worse for a while, to the point I thought I might yet have to give up work. It did gradually get better, but it took over 6 months before I felt anything other than horrible on waking each morning, and being able to bounce up the stairs rather than stagger. The main recovery factors were probably just time and patience, but I think being as grain free as I could reasonably bear, avoiding processed foods, taking vitamins and probiotics, and being very vigilant about cross contamination helped speed things along.
Because I was still struggling with some abdominal symptoms, and to try to get a formal diagnosis via endoscopy etc, I did a gluten challenge of just 2 weeks about 2 months ago. It was really horrible, as the all the body pain, fatigue, migraines and abdominal pain came back with a vengeance. Since going gluten free again, my recovery pattern has been the same as before, and after 2 months I still have some minor residual pain, and am still significantly fatigued. Things are still improving slowly though.
I hope you feel better soon. From reading other people's stories here, I suspect my improvement was reasonably quick. I've seen some say it took a year or two to feel significantly better.
PS It's early days for you yet, but have you considered that other intolerances might also be contributing to your pain? For me dairy is a big no-no for abdominal symptoms, soy seems to be a trigger for body aches and migraine, and coconut gives me burning skin. I am trying to be vigilant for any other triggers, and remain suspicious of eggs and nuts.