How were you diagnosed?

This question is regarding my son who is currently 'suspected of having coeliac disease'. He's 8, has had quite a few months of vomitting, tested positive with raised tTg levels, and had an endoscopy last week that showed 'changes consistent with coeliac disease' from biopsy in one portion of his bowel, however the biopsy from another section of his bowel was clear, so they are questioning whether it is coeliac disease! We've been advised to start a gluten free diet and then to go back for review in a month or so as it's not conclusive...just wondered how there were doubts when bloods and biopsy were positive?

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  • My consultant said blood is not fully the best marker only an endoscopy is. Your son's half way house is difficult. My blood tests were way off the scale when I had my crisis moment so there wasn't much doubt - the endscopy confirmed the diagnosis.

    I wish I had known when I was eight that I had coeliac disease. Get the poor chap on gluten free now and start feeling a whole lot better. Rest assured you don't go hungry and Mrs Crimble's Chocolate Macaroons are the best!!

  • This sounds so much like our situation.My daughter has been under GOSH for suspected coeliac disease since she was 2 (she' now nearly 4) Her blood test comes back negative but she recovers on a gluten free diet...(she suffers chronic constipation, severe mood swings, pain in abdomen etc). Her endoscopy shows blunted villi in both upper and lower tracts, and raised mucal levels, but because her bloods come back negative, they will not diagnose her, but cant say it is definitely not coeliacs. This is really frustrating. Anyone else with a similar story so I know I am not crazy????

  • Well what a quandary! So this is obviously of great concern as it's not apparently 100% conclusive.

    Years ago I read that small amounts of gluten only affected our upper gut tract and this area is far less sensitive in many coeliac hence the tollerance to foods with low levels of gluten in many but not all coeliac. So it could depend on how much gluten your son was ingesting prior to his biopsy.

    In my opinion the main thing is they have done a biopsy which has revealed flattened villi so they have quite rightly put your son on a gf diet and are going to monitor his progress. This I believe is to see how he responds to a gluten free diet and if he thrives on his new dietary regime then it will be apparent that he is a coeliac.

    So I would see a dietician ASAP. It is daunting at first but there are lots of gf foods out there and the benefits out weigh the hassle. The majority of prescription food co's will send you free samples so this is worth pursuing.

    When I was a child I used to get sick most days and then in adolescence I grew out of it but then it kicked in again in my mid 20's and I was finally diagnosed with CD in my early 40's and that was after going to a blood donor session.

    So your son is lucky being diagnosed at such an early age as he could avoid many of the complications that those of us whose diagnosis was missed have. And your son is in the system and that's the main thing.

    Good luck and please keep us informed about his progress as I think this will interest others on here. And I hope that your son responds to a gf diet.

    That's my 2p's worth,

    Jerry

    Ps I'd chaeck this web site out and Adriana is a member of GFG so you are in good company.

    glutenfree4kids.com/

  • As the others have said, I wish I had been diagnosed when I was 8 - instead of getting ridiculous medical responses to my poorly self for the following 4 decades! Consequently, like a most of the older late-diagnosis people on here, I have a lot of (now permanent) physical problems which the doctors are now happy to say are due to undiagnosed CD!

    I wish I had known I had coeliac disease when there were only 'changes' to my mucosa instead of late Marsh 3. I'm so pleased that you know the benefit of a gluten free diet early so your son can have a healthy life.

  • Hi - thanks for the comprehensive replies! Yes we are really lucky this has been picked up so early and quickly, even though it was a surprise to me as from reading about coeliac I didn't think (when they did the blood test) that his symptoms were all coeliac. The only reason they did the blood test initially was because I suffer from 2 auto-immune diseases (RA and lupus), so the paediatrician felt coeliac, being auto-immune may be a possibility.

    It may well be in very early stages, and from what so many of you seem to have gone through prior to diagnosis at a later age, we seem to be really lucky!

    He has been so good about it and taken to the gf foods really well (although I've told him it's only a month we need to do this for to start with)! Has been loving all the mince pies and brownies as usually I would limit things like that, but I guess I'm trying to make up for the fact that he has to give up so much so want him to have some positives! I think he is keen to get over the feeling of constant sore tummy and potential vomitting, so keen to try anything! He was starting to get paranoid about eating out anywhere (even at places like MacDonalds!) in case he was sick, so is getting his confidence back a bit!

    Have made an appointment at the GP to discuss a prescription for foods, although the dietician (yes had a call from one already, so they do seem to be quick around here!) said that some GP's aren't that willing to prescribe? Have any of you found that?

  • I was diagnosed this year. I first started getting symptoms in April, asked for a coeliac screen from my GP in October and had my endoscopy last week. The histology isn't back yet but the appearance of my duodenum was classical coeliac (not to mention that the specificity of anti-TTG and anti-endomysial antibodies is close to 95%) so I'm fairly certain of my diagnosis. I haven't yet seen a dietitian but I've got a routine clinic appointment with my gastroenterologist in March. Between now and then, I'll be booking an appointment with my GP once my histology is through so I can get started on prescription GF food. Buying this stuff on a student budget isn't easy!

  • We've just had a new Aldi supermarket built near us and amazed how cheap they are - also many of their own brand foods are very clearly labelled and GF. They don't have a free from section, so if you need GF bread etc you still have to get that conventionally, but from the savings we've made shopping there, funds the more expensive GF item from Tescos.

    Examples of their GF products include own brand beans, ketchup, bratwurst, bacon crisps, flavoured rice. Most of their stuff tastes good too.

  • I love Aldi- my family shop there back in Cheshire. Unfortunately, I'm a student in London so the nearest supermarket is Morrisons (which isn't bad) and there's no Aldi anywhere near... :(

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