HiAfter having ibs most of my adult life it has, I believe led to an autoimmune condition. Leaky gut then migraines and all the time the link was gluten.
Gluten free now and have been for over 3 years, dairy free too for over 2 years, private tests have led to this very restrictive diet. FODMAPDIET didn't help me and no doctor said there could be a connection although I lived with this for over 40 years. Never tested for coeliac disease but I think there was some overlap with gluten sensitivity.
All this time has really messed up my health.
Has anyone had this happen to them too?
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penelope2
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I do have chronic health issues for decades, a debilitating functional bowel problem amongst others. Since the medical doctors in the Netherlands weren't able to find a cause till now, and also looking at all my other health issues, I think that an autoimmune disorder/disease could be the underlying cause, that also led to my functional bowel problems. Rheumatic disorders/diseases do appear in my family, from my mothers and fathers side. I will be seeing a rheumatologist, also the experts on systemic diseases/disorders, soon. I will have a consult at the university hospital Leuven, Belgium.
I've been seeing the physicians of the rheumatology unit of the university hospital hospital Leuven. Their preliminary clinic working diagnosis is primary Sjogren's syndrome. More consultations to follow.
The medical doctors (rheumatologists) at the university hospital in Leuven have evaluated the blood works / chest x-ray and echo of the organs in my abdomen and concluded that it isn't Sjögren’s disease / Sjögren’s syndrome that could be the underlying cause of all my health problems including the functional bowel problems with daily recurrent constipation/obstruction in my right lower abdomen. A chronic local problem with the intestinal motility as I experience it. Only a prokinetic drug like bisacodyl 5mg does help and I need to take it every 3 to 4 hours during the day.
There are many links from gut issues to other conditions...as for autoimmune well you would need to be tested for an array of things which is not something any of us will get unless we demonstrate the need to be tested. I have IBD alongside my IBS and arthritis/joint problems that are related to the IBD. In terms of coeliac it is a blood test and my gastroenterologist said if people are not positive for coeliac then he sees no reason why people restrict their diet. I am not coeliac but at one point did follow fodmap (made no difference at all) as suggested by a GP. You mention migraines and I have them too - currently having migraine type headaches part of each day. So, yes, I feel a lot of these conditions are linked.
My vet daughter had a dog sneeze in her face when she was newly qualified, and this caused a severe stomach bug, for which she was hospitalised a week in isolation as they didn't know what it was! When she was discharged she was told, eat easily digested food, rice, pasta etc, until things settle, which she did. But the infection resulted in a leaky gut, (which she didn't realise) and has suffered ever since. Severe migraines, almost every day, IBS-D, and she has PCOS too. She has seen various people over the years to little or no effect. She has a wheat intolerance, so is GF now, and has learnt what she can and can't eat by trail and error. She saw a neurologist last autumn and has been prescribed the new Rimagepant drug, which actually works to prevent the migraines. All this is to say don't give up, we are masters of our own destiny, and GP's know little outside their particular interest if they have one. The best thing is to read as much as you can about your issues, so you are informed, so when you DO go to the GP you are knowledgeable about your symptoms and take control of the situation. Don't take no for an answer !
It is very important to note that if you are going to be tested for celiac disease, you Must go back to a normal diet including gluten for at least 2 weeks. If you are not eating g gluten your body will not produce the anti body's that they are looking for so you will get a false negative result.
I think it's very easy to point at IBS and say I've got that so it's causing all my other issues too. Especially when IBS is so poorly understood and so poorly treated by many health care professionals. I'm not saying you're wrong, just look at all the other possibilities too.
I developed IBS post chemotherapy (pretty common I believe) 5 years ago. When I developed chronic migraines nearly 3 years ago I immediately blamed my IBS (my migraines affect my gut). Then talking it through with my mum I realise that every time previously I'd had migraines it had been during hormonal changes, puberty and then pregnancy. I'm in my late 40s, I'm peri-menopausal. It's far more likely that menopause is the cause than my IBS but they do interact, if I'm having a flare up then I'll likely have a migraine and if I have a migraine then I'll get a flare up. It's frustrating as well as debilitating so I can empathise.
YES, Penelope. Reading your post was like reading my own story. I have not tested positive as celiac, but I have found that I cannot tolerate gluten. I found out the hard way two weeks ago, too. My overall story: I had a contaminated meal in August 2018 and reacted immediately. Wasn't diagnosed formally until April 2019 with SIBO and colonic disbiosis. I went low-FODMAP as a vegetarian, along with migraines(!), I just had an excruciating experience that set me back five years. I spent nine hours on Friday between the GP and the Surgical Assessment Unit at hospital because the main was debilitating.
In the past two weeks I have further restricted my diet based on what I've learned about myself and guidelines: gluten-free, vegan, no soya protein (except tofu and tempeh), and low-FODMAP. The only thing really that has helped me is this diet (organic, whole foods whenever possible), a daily sachet of Laxido, and FixBiome SIBO supplements (expensive but worth it).
I want to know if I have leaky gut and if it's causing damage. Thankfully my migraines have stopped for the time being; sometimes they lasted three weeks! But the NHS is a dead-end. So now I'm booking a free discovery call with some functional nutritionists. My GP agreed, saying that the NHS is not really up-to-date on microbiome gut issues to be able to deal with them.
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