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I think I may have coeliac disease

(20 Posts)
MedusaIsHavingaBadHairday Sat 09-May-15 21:55:23

I've had bowel/stomach problems for years.. terrible left sided pain..sometimes right.. sometimes the runs, sometimes constipation. Pasta or bread always makes me feel dreadful..pain bloat and unwell.

I also have intermittent ataxia and peripheral neuropathy problems...have never had a proper diagnosis for WHY.. it comes and goes in severity (but enough to need a blue badge for bad days)

I had a colonoscopy that showed diverticula (not that surprising given my age) but it didn't really account for the constant pain and bloating.

I'd never really thought about coeliac disease or knew anything about it until DS1 had a girlfriend who was a coeliac..and seeing me with a hot water bottle clutched to my stomach, suggested I should really get tested. I had never heard that it could cause ataxia too, but apparently it can.

I don't want to look a fool, going to my gp and demanding tests if I'm way off base, but are there any poeple here who can tell me if it's likely? I try to avoid eating bread and pasta etc but have not gone properly gluten free . Would I need to eat a load of gluteny stuff for the tests to be accurate ? sad or would eating the odd cake/ Alpen for breakfast (ouch) be enough?

FresherThanYou Sat 09-May-15 22:06:02

I don't think you need to stuff yourself with bread & pasta, just normal diet for 6 weeks prior to the test.
It really depends on your GP, presenting symptoms are so much like ibs that they could fob you off. I had 6 months of constant diarreah & pain & GP only ordered the test bc I went in there crying one day!! It's worth doing though bc you get the prescription for food which does bring costs down. Good luck x

FluffyCubs Sun 10-May-15 16:36:55

Im interested too......dreadful psoriasis for five years, chronic anaemic, and if I eat much wheat it floors me with headaches. Yesterday I had two pints of wheat beer and had to dash inside a pub In a pure emergency, uncontrollable diahorrea.

If you want to get tested, be careful on how much you cut it down.....I cut out bread couple of months ago, if I eat it now, I'm doubled up in stomach pain. And will also have a crippling headache. I seem to have made my symptoms worse.

FluffyCubs Sun 10-May-15 16:39:24

Oh, I wanted to ask you if you have any autoimmune diseases! Do you?

Rivercam Sun 10-May-15 16:42:08

Go with your gut (excuse the pun!), and go to the gp. It would be better to go and look a fool, then to suffer indefinitely. Why don't you go and present your symptoms and see if he/she will refer you for tests. If he/she fobs you off with iBS, then start demanding tests and mention vie alias.

Have you looked at the Coeliac UK website? Maybe worth talking them also.

Rivercam Sun 10-May-15 16:43:35

Coeliac, not vie alias.

Lonecatwithkitten Sun 10-May-15 16:46:12

You need to really be eating gluten containing products everyday for 6 weeks prior to the test for a negative to rule it out. So currently eating the occasional cake could give you a false negative.

taeglas Sun 10-May-15 17:13:08

You can do an on-line assessment which tells you if you should/should not get tested for Coeliac disease. You register your email and can choose to have the result emailed to you. This can then be shown to your doctor

FluffyCubs Sun 10-May-15 19:16:31

Thanks, that was helpful, and suggested a test.

I really don't want to keep eating makes me so Ill do I need to test this way? Is there an alternative?

PoshPenny Sun 10-May-15 22:00:36

OK you can go to your GP and describe your symptoms and ask for a blood test for coeliac.

Now let me me tell you my story. I got blood test for coeliac which came back negative. I felt so bloody awful I went gluten free anyway, I was at the stage I felt I had nothing to lose by doing so. So it turned out to be the best thing I'd ever done, discovered I had lactose intolerance as well once I'd removed the gluten. 20 months on I've now decided I want a proper diagnosis (or not) and will have an endoscopy in September. according to the GI specialists the blood test is not infallible. I've been told I will have to eat gluten every day for 4 weeks prior to the endoscopy.

so I think if I was you I'd be doing some research and asking for an endoscopy as well as the blood test.

FluffyCubs Mon 11-May-15 05:32:44

My inability to deal with wheat/gluten has really worsened since I cut out bread, I'm scared to cut it out completely before a dx

FluffyCubs Mon 11-May-15 05:34:03

Penny, do you have any other autoimmune diseases? I have raging psoriasis which was why I was thinking about wheat. In the last few months I can't eat any.

specialsubject Mon 11-May-15 10:06:27

sadly there is no way to get an accurate test except to stay on the gluten. Give it up and you won't get a trustworthy result. Sorry.

our GP said that it was blood test first, and if it was positive then endoscopy (which obviously carries a risk).

FluffyCubs Mon 11-May-15 12:40:59

Presumable, though, the endoscopy would be completely accurate! What mean cos of sedation?

PoshPenny Mon 11-May-15 15:58:29

None diagnosed fluffy, but I do wonder about Hashimotos. I lost a stone easy peasy when I first went GF, after 4 years of not being able to lose a thing and hearing and sight went back to normal from being pretty grim. I did get a thyroid antibody test done, I was told "normal" but by then I had been GF for over 6 months. I'm going to go and ask for it to be re done at the end of this gluten challenge in the autumn. I do have thyroid issues that I get treatment for privately, the NHS claim there nothing wrong with my thyroid which is not true as I've felt so much better for the treatment, but still sadly a bit of a fat old trout.

Superworm Mon 11-May-15 23:06:22

Peripheral neuropathy was my main symptom before being diagnosed with coeliac disease. this is useful

FluffyCubs Tue 12-May-15 08:03:37

That's very interesting, penny, cos when I hit 25 I put on over four stone in four months! Dr said it was gynecological issues I had, but im now beginning to wonder......I just couldn't shift it until I went low carb I dropped it all at the rate of well over a stone a month, it just fell off me.

There's no way I could handle endoscopy, think if today's test is negative, Im Going gf anyway.

FluffyCubs Tue 12-May-15 08:05:59

Oh, yes, super worm, I get the neuropathy thing when v tired or stressed, always put it down to my psoriasis. Always outer legs and arms, can't bear clothing on them. Wow. Celiac central is a great site.

Shatteredmamma1 Tue 12-May-15 08:12:18

You only have to eat the equivalent of a couple of slices of bread/day for the test to be accurate. Just so you know you don't have to overdo it and make things worse.

TooMuchRain Tue 12-May-15 08:29:21

I went to the GPs a while ago because I have problems with constant bloating and it was/is really getting me down. They arranged for a series of tests including coeliac and bowel cancer and were very understanding. They certainly didn't make me feel like I was over-reacting.

Luckily for me they came back negative so I'm still trying to work out what causes it.

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