PBC and Coeliac Disease

[liver-bird]

I have suffered with regular pain and diarrhoea which my GP put down to my PCB. I accepted this and suffered on until it got really bad and in desperation I tried eliminating things from my diet. When I cut gluten (wheat, barley, rye) the improvement was amazing - no more pain or diarrhoea. So GP ordered a blood test which showed antibodies to gluten and an endoscopy followed which confirmed Coeliac Disease. Coeliac Disease is another autoimmune problem to add to my collection (also have underactive thyroid)

Although being gluten free is a nuisance, I am feeling so much better, losing weight without trying too hard and my swollen fingers are going down. I have read that gluten is so inflammatory that it can bring about other autoimmune problems and I am wondering if caused the PBC ! I also have osteoporosis which could be linked to coeliac as it can prevent the absorption of essential vitamins and minerals.

Knowing what I know now, I would have insisted on being checked for other autoimmune problems 12 years ago when they found my underactive thyroid.

I am sharing this in case any of you are the same. Best wishes. Diane

[butterflyEi]

Hi liver-bird

Rotten you had to wait so long for a better outcome but how fantastic you are feeling better. As my dear old Mum would say upwards and onwards!

Thank you for sharing.

Best wishes

[Hidden]

It's good to hear you are feeling so much better, I was routinely tested for celiac ( twice now) the second time was when they found I was deficient in vitamin D . Which was negative, I was given the dx of IBS. Five years on I get to see a dietitian and put on the FODMAP plan to eliminate foods that are known to irritate the IBS, the result is I don't tolerate wheat or dairy. Iam now at the stage of the FODMAP plan to find out what my tolerance level will be.

[liver-bird in reply to Hidden]

Hi Candy - did you know that you can have a negative blood test for celiac but still have it. They take several biopsies during the endoscopy and this is the only way they tell if you have it.

That said the medical profession now recognise that you can be allergic or intolerant of gluten or wheat. Good luck with your FODMAP plan. Let us know how you get on. Best wishes

[Hidden]

Yes I had a negative blood test but Gastro said lets go for the biopsy on the symptoms I was getting at the time. So I had the biopsy 5 years ago, it was negative which surprised me and the person carrying out the procedure ( I elected to be awake not something I would do again though) he remarked at the time the finger like villi were very flattened. But I went with the results as the test is considered the gold standard. Wheat definitely affects my digestion it's now all about finding my tolerance level to remain symptom free. take care

[liver-bird]

Candy I would query the results because I was told that flattened villi indicate celiac disease. I was also told that because the villi are flattened, there is less area to absorb vitamins and minerals from your food and that is why celiacs become low in these and have to have supplements. I see you were low in vitamin D like me - in my case this led to osteoporosis and I have broken 5 bones in the last 10 years so it is important to get the right diagnosis and checks. Sometimes mistakes happen in health care so it is worth querying how you could have flattened villi but no celiac disease. Best wishes Diane