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I am in a bit of a state re:Coeliac. Please can anyone offer help/advice?

(13 Posts)
Pinot Sat 27-Oct-12 15:25:49

Thanks for clicking my thread smile

Background (as brief as poss so as not to bore you). IBS symptoms for 6 years together with depression/acne/back pain/hip pain. I am 37.

New GP dx me as possible Coeliac, rather than having a lot of separate issues - he kind of connected the dots. Sent me for blood tests but told me to go gluten free for a month first. Of course, this was completely wrong. Test came back negative - false negative? Have been on GF diet ever since as nigh on all of my ailments disappeared on a GF diet.

GP asked me in March to go back onto a gluten diet to have a re-test. I tried but within 3 days I was in A&E with such vicious stomach pain I had to stop.

Had endoscopy on Thursday (part of GP's referral) and I couldn't complete the test as I had a panic attack blush The Consultant says I now have to eat gluten so that when they re-do the endoscopy in 2 months time, they will be able to dx Coeliac (or rule it out).

Do I have to eat gluten for a full 2 months? My recollection is that a "gluten challenge" is 4 weeks or so - I really don't want to endure this challenge for any longer than is strictly necessary. In my sedated state I forgot to ask the Consultant.

If you've got this far, THANK YOU, and any advice, please?

CajaDeLaMemoria Sat 27-Oct-12 15:29:15

4 weeks is the minimum, but can often result in false negatives if you've been off gluten for a while. So it's usually 4 weeks if you've already been consuming gluten, and 2 months if you've been on a gluten free diet.

It's horrible, especially until your body is used to the gluten again (it took a fortnight or so for me) but it's better to do it for 2 months and get a definite result than have to keep doing it again and again...

Good luck, by the way. It sucks sad

Pinot Sat 27-Oct-12 15:31:25

Ohhhhhhhhhhhhh really? sad Thanks for the advice. I was soooo hoping he was wrong smile << weak smile

straighttohellymelly Sat 27-Oct-12 16:08:19

I'm in the same position- not tested as unable to face the 8 weeks of gastro complications. I have just got back from A+E with an ellergic reaction and the Doc there, who is coeliac, said I have to get tested because of the increased cancer risk shock. I didn't know there was an increased cancer risk. Will have to mull it over.

freefrommum Sat 27-Oct-12 18:41:54

I really feel for you, and have to say that I really hope you put in a formal complaint against the GP who told you to go GF before testing - what an idiot!!!! That GP has put you in a terrible situation and it makes me so angry. Anyway, re: how long you need to be eating gluten before testing, I'm pretty sure Coeliac UK recommends a min. of 6 weeks sadly. Might be worth giving their helpline a ring, they are very helpful. Good luck.

Pinot Sun 28-Oct-12 08:22:58

helly, yes there is a much higher chance of stomach and bowel cancer sad And brittle bones.

freefrommum, thanks for replying - I was hoping you'd click my thread as I've seen you around on this topic and value your opinions.

FSB Tue 06-Nov-12 04:37:01

you poor thing, that is not fun.

just one thing - would you not consider just carrying on with the gluten free diet without the formal diagnosis? if it's working for you..?

DD was diagnosed at 2.5 with the blood test, and we refused to bow to Drs pressure for a biopsy, because we felt it was too invasive and the diet (that we had her on for 4 weeks by then) was working so dramatically. the only reason they could give me for needing the biopsy was that it was 'policy' hmm

and, apart from not being allowed to claim GF foods for her on prescription, there doesn't seem to be any other down sides.

just saying - because it's a diet-based solution, rather than surgery or drugs...

good luck, whatever you decide to do [hugs]

Pinot Tue 06-Nov-12 07:57:22

Hi FSB, I have thought of that. My concern is that coeliac gives increased chances of arthritis/bone density problems and some cancers. It's common to get tested for such issues when you have a diagnosis of coeliac. So, afaik, a formal dx would allow me to be checked.

Also, I'm not the best at staying on the wagon - if I am just gluten intolerant, then occasional slips aren't too much of a problem (other than tummy pain which goes away). Whereas 'slips' when coeliac are more dangerous as they can lead to long term damage... so I'm much, much more likely to stay 'on the wagon' if I know for sure I have to be careful for long term health, not just short term discomfort.

If that makes sense! smile

freefrommum Tue 06-Nov-12 09:43:48

Makes perfect sense to me Pinot. Getting a definitive diagnosis might not be the be-all and end-all but I do think that it's important given that it's a lifetime diagnosis and something that you really should have on your medical records so that it is taken seriously (eg if you have health problems in the future or are admitted to hospital & need a gf diet etc). It also gives you access to ongoing consultant care and, perhaps most importantly, access to advice and support from a dietician. Yes, there is also the issue about GF foods on prescription but I don't think this is the most important factor. Getting the right care and support from the medical profession is far more important. So if you can get the diagnosis then it's worth doing. However, I do understand how difficult it is for those who've already gone gf to put themselves or, even worse, their children through the agony & distress of reintroducing gluten just to get the diagnosis and I'm very glad we didn't have to do that - it was bad enough having to make DD keep eating gluten for 6 weeks while waiting for the biopsy when we were 99% certain from the blood tests that she was coeliac.

hellymelly Tue 06-Nov-12 16:29:03

That is my thinking too- although actually I am really strict as the consequences if I have gluten by accident are not good. The only thing I'm not careful on is possible traces, in things like green and black's chocolate for instance, I eat that and don't react. If I got a positive diagnosis I would avoid anything that may have even been processed near gluten, so I can see there would be an advantage to knowing, I just feel green at the mere thought of going through the hell of eating it again.

hellymelly Tue 06-Nov-12 16:30:27

Oh and I think the risk to bones/cancer etc, is only if you are eating gluten isn't it? If you are very strict and avoid it completely then I don't think the risk is still there (this is just from asking a coeliac, not from a GP).

CMOTDibbler Tue 06-Nov-12 16:35:57

In many areas, adult coeliacs don't get any followup though, and as long as you are strictly gf, your bone density etc will be OK. Considering the issues you are having doing the endoscopy, and the result you get from going gf, I'd just do the diet.

BTW, I've been diagnosed 14 years now, and have had no followup since then.

FSB Tue 06-Nov-12 19:38:00

i don't envy you having to make the decision Pinot. i had been told that the risk of associated illnesses is only increased if you don't follow a strict GF diet, and because DD was so young at the time, we decided to go with the blood test as confirmation, it may have been a different story if she had 30 years of damage to her intestines. we're in the US now, and they seem fine with giving her annual GI appointments as management without any invasive procedures (which is very un-american! perhaps we are lucky to have a relaxed Gastroenterologist...)... good luck with whatever you decide. wine

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