Can someone help me understand my results?

I am hoping that you may be able to help explain this for me. I had an endoscopy 6wks ago and when I went for the results 2wks later my consultant told me I had villus atrophy. I had a blood test for cd 5years ago which was negative and had another blood test when I went for the endoscopy results which is also negative. I have been gf for 4wks but have not felt much better. The doctor is now unsure whether it's cd or not so has done further blood tests . Where do i go from here?

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  • Think you need to get a referral to a specialist.

    Villus atrophy means permanent damage to the villi - the small projections from the lower intestines that digest nutrients from your food.

    If the damage is permanent it could be that you have refractory disease, meaning that symptoms persist. This is usually treated with steroids and immune suppressants.

    It may also be worth keeping a food diary in case other food components are causing coeliac-like reactions. A recent Swedish study found that when milk was introduced into the guts of test subjects who were coeliacs, 50% of them suffered coeliac like reactions.

    So, I would keep a food diary listing everything you eat and drink and any reactions/your state of health for 2-3 weeks. At the very least it will give the consultant more to work with. But you may want to try laying off milk for a day or two to see if it helps.

    Blood tests are not always conclusive and they rely on you having consumed gluten usually for a positive result, but the absence of a positive result does not mean you are not coeliac.

    For the time being, stay gluten free, keep a food diary and get a referral to gastro specialist on the basis that it may be refractory disease.

  • Hi Busby

    I remember you were on here a couple of weeks ago and you were quite new to the diet. Refractory Coeliac is a long-term coeliac concern but not at all a concern when you are recently diagnosed for a start. I would put that out of your mind now.

    Villus atrophy means that they have been able to see some damage to the lining of your gut caused by gluten ingestion. Now, when the blood tests are performed they are looking for IgA in the blood stream (part of your body's immune system). The process of IgA getting into the blood stream means that it has got through your bowel wall. This does not always happen in all people, but happens in most. Whilst this will happen in most coeliacs, hence the IgA test being reliable but not completely conclusive, there are some coeliacs in which the villus atrophy is seen without IgA in the blood (IgA will only be present in the bowel).

    It is also possible to be deficient in IgA (so even in your bowels there is not much around), which usually leads to a negative reading from a LOW IgA score (but not non-existent IgA).

    Any villus atrophy is a definite positive for coeliac disease. You definitely have coeliac disease, but you are a rare species!!

    Stick to the GF diet and in time, you will start to feel better.

  • Thank you , I am eating better now after taking all your advice. I have had no diarrhoea or bloating . I have had symptoms of indigestion for many years and really started to be unwell in may this year with abdominal pain. The consultant thinks that the blunting of villi is reversible but has tested me for giardiasis and has put me on some antibiotics. Can't wait to start feeling a bit better and am really trying to keep positive so once again thank you.

    Caron x

  • hi Busby, I was exactly the same when diagnosed 31/2 years ago; negative blood tests and villus atrophy, it took me a month or 2 to start feeling the benefit of being GF but stick to it, you didn't get this ill overnight and it won't mend overnight sadly. after a year I felt really well but after 3 I was even better! take care and be strict with your diet/cross contamination , you will get well again, it just takes time..

  • Thanks marywales, it's difficult to get your head around at times. I also get frustrated because I think I should be improving more quickly . I would be really pleased if you could tell me if there is anything else you did or are still doing to help. I am 47 and am finding all this really hard to deal with but I am really strict with the gf diet.

  • Hey Caron,

    I got Giardia in Morocco a few years ago. It's not pleasant and I was still feeling the affects of it about 2 months later. If you have this on top of a new coeliac diagnosis no wonder you're not feeling top condition.

  • how are you doing Caron? are you starting to feel a little bit better? still strict GF? family on board? do let me know, I think about you all the time, know what a crock of s**t it can be to start with ! mary x

  • Oh Mary that is so kind of you. All of the gfgs are really supportive and I really appreciate it. I am feeling a bit better. Strictly gf and trying really hard. Had a colonoscopy today and it wasn't too bad. Dr says he took some biopsies but doesn't think there is anything to worry about as my bowels have settled down and he thought everything looked normal. My husband and I were really cross though because I mentioned to him again that I am really uncomfortable just above my belly button and to the right of my abdomen. The dr then said that he couldn't explain all my aches and pains! This was the only complaint that I went to him with in the first place! My husband wanted to give him a piece of his mind and I just wanted to tell him to ---- off. I didn't though because I need the rest of the results from my blood tests and biopsies. I expected more of him and am reluctant to go back to him when I need my follow up endoscopy.

    Thanks for being there and putting up with me ranting but needed to get that off my chest. X

    Caron x

  • I had loads of colonoscopies all to no avail, don't know why they do them when they suspect CD, my colon was pristine it was the SMALL intestine that was buggered! but I suppose it rules out IBS, cancer and stuff. it's the endoscopy into the small intestine that is THE diagnostic measure for CD. and good on the old man for being angry, shows he cares and sometimes it's the angry partner that gets results. my husband has cancer x 3 and it was only me pissed off with no-one noticing that made them look again to uncover the 3rd tumour, in his back, that was causing all his pain.

    abdominal pain is par for the course I'm afraid, if it persists after 3 months GF get himself to yell at your GP. keep fighting, keep GF and keep positive, and keep the husband he sounds like a good un !! enjoy the sunshine that we are promised xx

  • by the way, rant on girl, 'dim problem' as they say by here!

    anytime.

  • Cheers, it's made me so cross I think it's given me my fight back. This is the consultant by the way my gp is really good. Sorry to hear about your problems, hope you and your husband are ok now. You have no idea how much you and all the other gfgs are helping me. Did you have a repeat endoscopy and if so after how long to see if your villi were responding to being gf?

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