Hi can anyone give me any help or advice- i have had PA for 20 years - l am 50 years old - and for the last 8 months i have been struggling with bowel issues, i have lost three stone in weight, and am on a restricted diet, including gluten free for the past six months, this has helped, but i am still waiting for a referral to to Gastroenterology - i have read lots about a link between PA and Coeliac - but my Doctors just keep telling me it is IBS or stress - after a very bad reaction to accidental Gluten at the weekend - i am waiting for a phonecall back from the Doctor.
Bowel cancer has been ruled out - but i cant seem to get anyone to realise how much this is impacting on me, l have been off work for several weeks - due to having constant bowel issues and the need to go to the toilet up to 8 times a day... i am at my wits end - any help, advice gratefully received
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suziesparkles
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It's just a thought - if I eat dairy it plays havoc with me - similar to you. I've stopped the dairy (as well as gluten and sugar) and don't have those symptoms anymore.
I have similar problems and there is a very strong and researched link between autoimmunity and gut permeability. A lack of (or no) stomach acid allows bacteria which normally resides in the colon to get into the small intestines. It allows fungus to do the same. These pathogens bury into the intestinal tissues and eventually breach the intestinal wall which is only one cell layer thick. This allows bacteria into your blood stream which can cause fatigue, muscle cramping, bone pain and all sorts of issues. Because your gut is leaky it Alison allows food particles to breach the intestinal wall and end up where they should not be. This signals your body to have a reaction to these foods. Most often wheat, gluten and dairy. I suggest you get a test for SIBO, fungal overgrowth and Intestinal permeability. This will let you see what is going on. I am working with a functional medical practitioner in London ( I live in Scotland) who is guiding me through this process. The treatment regime is a mix of herbal antibiotics, diet and gut repair. Like you I have been to the gastro, endo, spine surgeon and the neuro with all tests clear, more or less. So the issue for me is the gut which wasn’t immediately obvious but makes a lot of sense. I am not medically qualified I am just sharing my own experience and what I have leRned along the way in the event it might be helpful to you and others. I wish you good health.
I feel for you. For years I had the same symptom and lifestyle impairment. Three things helped but did not solve the issue. The first was the reduction and ultimate elimination of caffeine, initially intended to limit damage to the cells in the lining of the stomach under siege by PA antibodies. This change helped with the sense of urgency of the involuntary leakage. The second change was the gluten-free diet change you have made. My experience has been that if I eat foods prepared outside the home, some gluten often makes its way into the meal even if the dish is advertised as gluten-free. I speculate that is because the same cooking utensils are used to prepare "gluten-heavy" and "gluten-free" foods. The third change, recommended by my Gastro, is the use of Citrucel, an over-the-counter "bulk forming laxative." My initial reaction was, with all my trips to the bathroom, why would I want a laxative? Truth told the supplement helped. To hedge the risk of problems during the work day, I take it only before bed time. Just like our B-12 injections, this pill is not a cure. However, you might try it until you can find a Gastro who can help you get to the root of the problem. If you have a sibling or other close relative with celiac, as I do, you may be thinking this symptom is an ominous step in that direction, but being a lay person with no background in medicine I have no way to assess whether that fear is warranted. I hope you feel better soon. Rest assured you are not alone.
If you have PA then you have Autoimmune Metaplastic Gastric Atrophy (AMGA). As well as stopping the absorption of B12 his causes a lack of stomach acid (achlorhydria).
This can have the effects you describe - bloating, diarrhoea, etc. The lack of acid affects normal digestion and upsets the normal balance of gut bacteria.
Many people find relief by drinking something acidic with meals. Some choose apple cider vinegar, i prefer 30 ml of lime juice (it goes better with tonic).
You might also have another food allergy causing a t-cell mediated reaction in your gut. I had similar problems, after a colonoscopy the gastroenterologist put me on a low FODMAP diet, and I gradually introduced foods to see how I tolerated them. After two years experimenting, I concluded I am allergic to tree nuts. If I avoid them, I don't have symptoms. But for you, your weight loss is quite large. Have you had imaging studies of your abdomen, like CT or MRI?
Having one auto immune problem means we are much more likely to develop another one sadly. Take a look at the website for "Coeliac UK" - there is great information about symptoms and advice on getting tested. Bowel issues and weight loss are typical symptoms. Coeliac UK are campaigning to get people tested and are very very helpful if you call them for advice. To me it sounds like you have a problem with gluten and it needs testing to see if it is CD or intolerance (in my opinion)
(I have underactive thyroid and Coeliac and it took me years to get the CD diagnosed - Drs said IBS for years )
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