Sabrine

I have been making sure my gluten intake is as high as possible eating loads of bread and pasta. The strange thing is, it’s not making me feel ill at all.  It never has. And yet I definitely tested positive positive for coeliac on my antibody test. Very strange.

Our wonderful NHS has become rather slow of late so I am still waiting to find out more about my test results. I have recently had more blood tests taken which seem to be for vitamin deficiencies and I have my endoscopy next Wednesday. I will definitely ask what scale is used and then I will post my results. I am very grateful for the advice I have been given on this site. 

Has anyone else tried psyllium husks?

I find those tablets quite effective for the constipation. I just wish I could get consistent advice on whether it’s safe to use them long-term. It seems to be but I would like a doctor to confirm it.

I’ve only just had a diagnosis of coeliac from a blood test and I am awaiting a referral for a biopsy presumably to ascertain the level of damage to my intestine. I don’t seem to have the usual symptoms which I have read about on this site. I’ve never had diarrhoea, but I’ve had constipation on and off for the last three years. Unfortunately, as I’ve had MS for 25 years and a faulty hip replacement, I take a low level painkillers and osteoporosis medication both of which can cause constipation so it never occurred to me I had coeliac. Especially as I don’t seem to have any of the other symptoms that people describe here although I do have dry eyes and I was amazed to read that that can be a symptom of coeliac. I’m seeing a doctor on Monday and I will ask for a copy of my blood test results.  Could somebody tell me what questions I should ask the doctor about my blood test results and what I should look for in the biopsy result as a lot of it is very confusing. Apparently my blood test was 8.9.  Is that an antibody score?  I know they call it a weak positive but only just. Hoping that that score is reasonably good news or is it meaningless without the biopsy?

I love your  “last chance saloon” comment.  That’s exactly how I’m feeling and I have far too much nice food in the kitchen to throw away just yet.

Thank you. I was fine yesterday but I’m feeling a bit overwhelmed now. Mainly because this isn’t fair! I’ve had MS for 25 years so have to use a wheelchair because of my balance. I’ve had a faulty hip replacement that needs a revision. I have terrible osteoporosis, and in the last five years I’ve been diagnosed with an arrhythmia, which seems fairly harmless, an aneurysm, which thank goodness isn’t growing in my aorta, and in the last few weeks I’ve been told I’ve got blepharitis, which isn’t serious at all, just annoying, acrocyanosis which means my hands turn purple and nobody can find out what’s wrong, dermatitis, and now  this.  I’m not in my dosage yet and my main enjoyment in life is going out for coffee and dinner and lunch with friends. Still, I’m trying to stay positive and if a gluten-free diet sorts the constipation I’ve had for two years that really will be nice. I do eat fish and lots of vegetables and pulses so the diet won’t be a huge change for me but right now I just want to know how serious the damage is that I’ve already done. 

Sorry. Another quick question about the blood test. All I’ve been told on the phone is this “weak positive” comment and a level nine. She did say the word coeliac but as it was an incidental finding on blood tests for something else she was a dermatology nurse. Do the blood tests specifically diagnose coeliac or is it possible they’ve just picked up a gluten-free intolerance?

I’ve been reading the posts and trying to gather the information. Just diagnosed from one blood test so think I will ask for an endoscopy if that will show more information about state of my intestine. I hear about levels and I wonder can you reverse this damage and reduce these levels. I’ve been told I’m a weak positive with level nine. I’ve never felt ill apart from constipation for two years. I’ve also read that some people are very intolerant to gluten and others are only slightly. Cross contamination information is frightening it must be almost impossible to avoid and if it happens, does it mean you’re back to square one again ?  I’ve been sent a very good article so I’m reading through it but it is all quite daunting.

I am hoping for exactly the same as you Matt. Does the endoscopy give any indication of how bad damage is that has been done? I wish I hadn’t ignored the constipation for the two years but I really thought it was caused by other medication I was on. From what I am reading, I am hoping that damage done can be repaired or am I being too optimistic?

Finding this interesting but I’m confused. Just been told my celiac diagnosis today. No idea how long I’ve had it but I do suffer from constipation and I’ve lost a lot of weight in the last few weeks but fortunately no other symptoms. this is going to sound like an ignorant question but do I have to go completely gluten-free immediately or can I do it gradually. Will taking out most of the obvious things like pasta in my diet do any good or do I have to eliminate all gluten to do any good?

Thank you. I will read it in detail. And there is one piece of advice I would really like. Given that this fairly drastic weight loss has happened in the space of the last six weeks I would really appreciate it if someone could tell me what are the most fattening gluten-free things that I can binge on because I would feel a lot better if I could put some weight back on.I don’t eat meat. And I have definitely noticed that my appetite has been much smaller recently.  I have so many health conditions. I have multiple sclerosis, osteoporosis, a faulty hip replacement, an arrhythmia, an aneurysm, blepharitis, dermatitis and my personal favourite is acrocyanosis which no one has ever heard of including me! (Purple fingers). That was what I was being tested for when the coeliac diagnosis was picked up. I know coeliac is not going to kill me if I do the right things but at the moment I’m really feeling as if it’s the last straw!

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Thank you. I’m not sure if asking for an endoscopy is pointless or not. I will start reading up on gluten-free foods as the diagnosis has come as a complete surprise to me but I certainly don’t want to lose any more weight as I’m down to 7 stone six and I am 5 foot five. What advantages are there in getting an endoscopy result? I’ve only spoken to a nurse on the phone so the only information I have is the weak positive comment and the level nine.  I don’t think she intends to pursue it so I would have to ask for the endoscopy.

I was being tested for a skin issue and a coeliac diagnosis of a “weak positive (level nine)” has come back. It was what they call an incidental finding. I’m not really sure what that means and I’ve always thought I had a cast iron stomach but suffered from constipation and bloating because of my osteoporosis medication. I’ve had osteoporosis for many years and it is connected to my wheelchair use and multiple sclerosis so not the coeliac. I have just weighed myself and realise that in the last month I have lost nearly stone in weight. The dermatology nurse who spoke to me said it was nothing to worry about and if I didn’t have gastric symptoms I should just ignore it but given the weight loss I assuming that I shouldn’t ignore it. Could someone advise me about what I should do now. I’m assuming going straight onto a gluten-free diet is important. I’m in the UK so should I ask for further investigation? Or is level nine and “weak positive” a definite diagnosis of coeliac?