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Need Some Reassurance...

covsooze

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covsooze Enthusiast
covsooze
Posted

Hi! I'm new here and need some reassurance!

I have a sister with confirmed celiac disease. I've had stomach and other health probs for years now. I had the blood test for celiac disease some years ago and it was negative (I appreciate that there are loads of false negatives). However, following a hospital admission this summer, I had a whole series of blood tests and saw the gastroenterologist and a haematologist. the gastroenterologist arranged for the bloods to be taken and put me on the waiting list for a biopsy before seeing the test results. When I saw the haematologist, she said the test results looked like I have celiac disease but the gastroeneterologist would have to say for sure as that wasn't her speciaility. I phoned the gastro clinic to make an appointment, and they said my results were quite raised (didn't say what the 'score' was)and would expedite the biopsy (2 month wait instead of 8).

What I want to know is: given that the level of antigliadin (not sure I've got the terminology right here!) is 'quite raised' does that mean I've got celiac disease for sure? I know I have to wait for the biopsy before going gluten-free, but I'm concerned they'll turn round and say: oh, it's not celiac disease after all - not that I want to have it, but it would explain a lot of things and I really want to go gluten-free to get well.

Sorry to ramble! Looking forward to getting to know everyone.

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Nantzie Collaborator
Nantzie
Posted

Do you know what exact tests you had? Some of them are more specific to celiac than others. Given that you have a family history, and you've had symptoms for years, I think that it's pointing toward celiac.

I do know what you mean about kind of hoping you have celiac. I felt the same way, and was kind of embarassed about it, because nobody really wants a disease. But I think of celiac as more of an answer to years of symptoms, than a disease. I think most people who have been fighting these symptoms for years have the same sense of relief that there might be a light at the end of the tunnel. Because with celiac, there is actually something you can DO about it. And if you do that, you start feeling better. Whereas, when you just get thrown into the IBS pile, yea, you've got a name to call it, but there's a limit to what you can do about it.

I've got my gastro appt in January, and I'm hoping I get the biopsy soon after. It's really all I can do to wait. I just want to go gluten-free and start feeling better too. Some days I go back and forth on whether or not I even care about getting a definite diagnosis by doing the biopsy. For me though, I really need to do the biopsy, as some of my family is less than supportive. I don't want to have to argue about it or justify being gluten-free at every family function. I just hate feeling like crud when I know it would be so EASY to feel better. There are some people on here who opted not to do the biopsy and just go gluten free anyway. I think it's a personal decision. So that's something to consider.

Nancy

tarnalberry Community Regular
tarnalberry
Posted

If you're lucky, there will be a correlation between your tTg scores and your biopsies. Chances are, there will be. (It happens more than half the time. ;-) ) But there's no guarantee. Particularly if you don't have significant damage (and the lab reader wants to see significant damage before diagnosing you) or if they don't take enough samples from damaged places.

Lovinglife Rookie
Lovinglife
Posted

I would suggest committing to the gluten-free diet NOW. If not 100%, at least minimized, because I would imagine that, like many if ud, your body has gotten its share of abuse and probably needs some relief. Much love and luck to you.

Florence

covsooze Enthusiast
covsooze
Posted
  • Author

Thanks for yuor replies :)

I've just got copies of my test results from my dr. i don't know if the labs routinely test for all of the 5 'panel' items here in the UK as they do in the US, because they've only tested 3, as far as I can tell - IgA and TTG are positive. IgG is within normal range. The lab is saying the results 'support the dx of celiac disease.'

What I'm wondering now is, given the family pattern, should I have my son tested? He's 2 2/3. He has never really had formed bms and often they are really loose. They are sometimes pale as well and often have bits in them. he has days when he'll eat absolutely masses and others when he'll eat hardly anything (don't know if that's just coz he's a toddler ;) ); he is generally very boisterous, but often also has times when he doesn't seem 'himself', being v quite and almost lathargic.

I don't want to have him tested if he's too young for it to show anything, but equally, if he has got celiac disease, I know it's best for him to have a dx sooner rather than later. He's seeing the paediatric allergy specialist anyway in Feb as he has a yearly review of his raw egg allergy, so I was thinking maybe he could have bloods taken after Christmas and we could ask the paediatrician about it in Feb. Should I put him through that?

tarnalberry Community Regular
tarnalberry
Posted
...

What I'm wondering now is, given the family pattern, should I have my son tested? He's 2 2/3. He has never really had formed bms and often they are really loose. They are sometimes pale as well and often have bits in them. he has days when he'll eat absolutely masses and others when he'll eat hardly anything (don't know if that's just coz he's a toddler ;) ); he is generally very boisterous, but often also has times when he doesn't seem 'himself', being v quite and almost lathargic.

I don't want to have him tested if he's too young for it to show anything, but equally, if he has got celiac disease, I know it's best for him to have a dx sooner rather than later. He's seeing the paediatric allergy specialist anyway in Feb as he has a yearly review of his raw egg allergy, so I was thinking maybe he could have bloods taken after Christmas and we could ask the paediatrician about it in Feb. Should I put him through that?

Based on family history, and symptoms, yes, you should have him tested. No, the results aren't quite as reliable in children that age, but it only means that if there's a negative, you check him again periodically (if there's continuing symptoms, I'd say yearly, but I don't know how well a doctor would buy that).

As for waiting or not... well, it seems like you need to be on the gluten-free diet already, so it might actually be easier to test him now so you can do more of Christmas gluten-free entirely. But I understand that you don't want him to miss things he might be used to. I usually don't advocate waiting, however, as gluten ingestion causes damage to a celiac's body - it's better to stop the damage as soon as you can.

covsooze Enthusiast
covsooze
Posted
  • Author
Based on family history, and symptoms, yes, you should have him tested. No, the results aren't quite as reliable in children that age, but it only means that if there's a negative, you check him again periodically (if there's continuing symptoms, I'd say yearly, but I don't know how well a doctor would buy that).

As for waiting or not... well, it seems like you need to be on the gluten-free diet already, so it might actually be easier to test him now so you can do more of Christmas gluten-free entirely. But I understand that you don't want him to miss things he might be used to. I usually don't advocate waiting, however, as gluten ingestion causes damage to a celiac's body - it's better to stop the damage as soon as you can.

That's what I thought. I've got to wait to go gluten-free until I have the biopsy - I don't have a date yet, but it should be Jan/ Feb time, so maybe we can all go gluten-free after that :D I think the dr would be willing to test him yearly, as he's testing DS yearly for the egg allergy anyway. I'm really looking forward to going gluten-free. I'm thinking of cutting down though in the meantime - so although I'll have my normal lunchtime sandwich, I'm having gluten-free snacks :D Hopefully I'll be able to put some weight on without resorting to loads of chocolate...lol

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