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About LolaK

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  1. Thank you Mushroom - I've not seen any results for the blood tests, we were just told verbally, but I will ask the GP for a copy. I did get the biopsy result which said no sign of coeliac disease, villus architecture in tact etc. The endoscopy showed patches of Duodenitis.
  2. Hi I've posted before - my teenage son had a positive blood test but negative biopsy. I was reading on another thread that false positive blood tests are extremely rare? My GP said that the blood tests were not terribly reliable, although one of the consultants later said they had a high rate of reliability!!!! I am confused - also my son had a second blood test at the hospital before his biopsy and that was negative - has anyone else experienced this and is there any reason why this should happen? (he was still eating heaps of gluten before the second blood test and biopsy). I also feel annoyed that I couldn't go to hospital with him as my daughter was ill - his father accompanied him - I had wanted to ask how many samples they would take for biopsy - it turns out they took three! Thanks in advance - you have all been very helpful and supportive! Lola
  3. ljgs, I know it's a while since you posted this question ... I've only just discovered the international section been so busy on the pre-diagnosis bit. My 16yr old son's been gluten free for around 5 weeks now so I am a novice really but I do live in London. If they are self catering any of the larger branches of our supermarkets (Tesco, Sainsbury's, Waitrose, Morrison's) will have a Free From section where you'll find Genius bread (the best in my opinion) Warbutton's bread and rolls (not too bad) gluten-free pasta, cakes, biscuits, cooking sauces, and condiments. Waitrose is the best I have found so far and has extras like gluten-free pretzels, bread sticks and canned soups. The smaller branches of supermarkets tend not to have gluten-free food. There are some good independent whole food stores in London but I wouldn't recommend our main chain Holland and Barratt - their Gluten Free selection is very meager and expensive. I don't know South Kensington very well but it's a good up market area and will probably have a decent Sainsbury's or Waitrose nearby. Ive heard of a new Pizza chain in that area called Hell Pizza that does gluten free pizza that have had good reviews. I've never been to USA so I don't know how the labeling compares, but I have had no problem so far. My son struggles with it all a bit as it's quite new to him but if she knows her stuff I think she will be fine. Eating out at lunch time is a bit of a problem though - I think Subway which is a high street chain of cafe/takeaway has started to do a gluten-free sandwich. I think packed lunch might be advisable. Ther are chains called Pret a Manger and EAT which although may not have specifically gluten-free stuff, they are knowledgeable about what their foods do contain. I've never heard of Chex, gluten-free or otherwise but as I said I am a newbie and have a lot more to discover. I hope your daughter has a great time in London, I am sure she will manage fine. Let me know if there is anything else I can help with. Lola
  4. Well, we went back to the GP today as my son has been discharged by the gastro consultant as 'better' and no need for further investigations. I was surprised by his response. He said we can't know at what point Coeliac damage appears in the gut and that the biopsies were taken from only a few places and may have missed damage that was there. He also said there is so much the medical profession don't understand about Coeliac and Gluten problems. He is going to get back to the consultant and ask him why my son was discharged and then consider sending him to a general consultant (although they are getting rarer here in UK).But he said an official diagnosis is not really necessary if the diet is working, that my son obviously has a problem with gluten even if it can't be 'explained'. He was disappointed that the Gastro thing had been so unsatisfactory for us and positively supportive of continuing a Gluten free diet. This was what we needed to hear today and positive reinforcement for the diet for a teenager who was pretty much given permission from the consultant to go back to a normal diet.
  5. Yes, my teenage son has suffered from what he describes as "deep aching in back of calves" for no particular reason (not linked with sport or anything) and all sorts of other aches in legs and lower back. He has used Magnesium Oil in the past which has helped. Lola
  6. I found that really interesting - I have read a couple of similar articles but can't think where (might have been here :-)) which I'll try look out and post,but late here in the UK and off to bed. Has anyone else had positive blood test followed by negative one or know why this might occur?
  7. Well, my son is well and truly on gluten again, only eating gluten-free at home (and his father's house too) I reckon, but out and about I think he's having his old favorites - sandwiches & sausage rolls!. He had a complete meltdown this evening and afterward when his father and I talked about diet (the meltdown was triggered by something else) he kept muttering under his breath "I'm not Celiac". This is what I dreaded because on Gluten he really isn't reasonable or calm. The meltdown was shocking - screaming and swearing at his father and I tears rolling down his face and he was hoarse with shouting. Like when a toddler loses it. We are going back to GP anyway on Tuesday (who seems pretty reasonable and who first suspected celiac) Are there any Gluten intolerance tests or food allergy tests that can be done? I'm only chasing a diagnosis of some kind for him because basically he believes the biopsy and the registrar at the hospital and he's not at one with his body or feelings right now cos he gluten up. Also has anybody had any experience of Vega testing?
  8. What about a positive blood test followed by a negative one? Is this common? Thanks for all the positive comments by the way, I was feeling pretty disillusioned! Lolax
  9. Just thought I would update as we went to hospital for follow up. I thought it would be frustrating, but it was worse than that. The registrar was different to last time. she started by saying "good news the biopsy was negative and so was the blood test" (they did a second test at the first appointment). she asked J how he was and he said that he had gone gluten-free as soon as he had biopsy done, that he was feeling better now, more energy, hadn't missed school and was putting on weight. He also said that when he had eaten bread or pastry had felt terrible in his stomach and aching had returned. She looked incredulous and said that was great but he didn't have coeliac disease and they can't give him a diagnosis. So I asked her why she thought he had improved and she said because some people don't react well to wheat or gluten. She said she would go and ask consultant if J could stay on the diet and maybe do a challenge at a later point. She came back and said "Dr L says he definitional does not have coeliac and that he should be discharged from his care. he can continue with diet if he wished but he isn't coeliac" I told her that the last registrar had said that if the biopsy was negative they would look for other reasons why he was so ill. But she said because he is better there is no need and they don't do that anyway. I have never come across such an illogical argument. I realise that staying on the diet is the answer, but she was telling my son he doesn't have it and that seed is planted firmly in his mind now. It was a complete waste of time and I feel so mad!
  10. Thanks Eatmeat4good for sharing that with me, sounds like a similar picture in many ways. We live in the UK so with a positive biopsy you can get gluten free foods on prescription, which I was hoping for, but that's maybe not to be. I was surprised at how well he has accepted the diet, but he did have a burger after the first week "just to see" and he felt rotten for about 3 hours afterwards with stomach pains and gas. He was in a terrible mood and picked a fight with his younger sister and everything dissolved into chaos and I realise that we have gone through so many scenes like this that could have been avoided had we known.. The next day he was feeling mostly better but tired and we talked about the effect it had had on him. I will update after Thursday when he see the consultant but we are staying gluten-free.
  11. Thank you Ravenwood, we will be doing our best to keep him gluten free, I will be interested to hear what consultant says on Thursday. Does anyone know if the Duodenitis is significant? Is it normal for someone so young to have this? Thanks Lola
  12. zus888 and etta694, Thank you both for your responses. Both very helpful and informative. I've been reading a few posts on here about diagnosis and it seems they should be taking tissue from multiple sites? Well it seems like they only took 3 samples from my son. Also He had one positive blood test and that was followed by a negative one that the consultant did. They noticed on the endoscopy that he had small patches of duodenitis - not sure of significance of that. Well we are going to continue gluten free although my sons initial reaction to the negative biopsy was celebration I know he realises the effect that Gluten has on him. and we will see what the consultant says Thursday. What is interesting is that he has always craved bread and similar products and even when he was a toddler he would over eat on bread and it always followed by screaming and colic. I will update on Thurs. Lola
  13. Hi I'm new on here. My 16 year old son has been ill for the last 2 years, mostly exhaustion and low immune system plus leg and back pains - loads of time off school and recently sore abdomen, bloating and gas. He had Glandular Fever 2 year sago and the GP thought it was post viral syndrome but tested him for coeliac and the blood test was positive. 1 month later he had the biopsy. In that month running up to it he was getting sicker and sicker, coming home from school and going straight to bed. So the day of the biopsy, as soon as he was ready to eat we started a Gluten free diet. The change was immediate. Not just physical such as gaining some weight more energy but also he became a joy to be with again. He had been so moody and aggressive for the past few years he was so hard to live with. And now as the title suggests we just received the result of a negative biopsy! I am really shocked as he responded so well and also had no time off school since being on the gluten-free diet (he's in the middles of important exams) Being 16 I know he will not want to stick to the diet very carefully now he thinks he has got Coeliac disease. I feel so disillusioned with it all - I just want him to be well. Any ideas what next? (He has an appointment next week with consultant at Barts Hospital).
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