Gluten Challenge too challenging

[Ffion2]

Hi, My GP sent me for blood tests, which came back positive. She says she doesn't think anything needs to be done. I had a biopsy twenty-odd years ago which was negative, but I've cut right back on gluten for decades. On advice, I've been doing the gluten challenge for a week (while the GP waits for 'advice from haematology as to what the tests mean'. I feel horrendous - dizzy, itchy, white mouth and throat and very very ratty. I'm being absolutely horrible. The OH is panicking. There's a four month wait for a gastro appointment, even if I could persuade the GP to go for it and a ten month wait for endo ... I'll have damaged someone by then. Is it worth all this to be told not to eat gluten? I'm sobbing into my hanky and dangling the loaf over the bin ...

[Lisahelen]

Not sure i would have gone from nothing to full on. Doing it in small reintroductions might have been a better option, especially as you have been almost gf for so long.

[gooseberryrose]

Hi Ffion, happened to me too, but I had the blood test 4 days into the challenge (test on 14 Feb) but mine was negative. GP says probably wasn't long enough and referred me to gastroenterology because my symptoms got so bad. Endoscopy has been ordered, but I also have to wait for months. I had horrible GI symptoms during the challenge and like you, dizziness, alternating between sore tummy and then really hungry and light headed, got very emotional, couldn't sleep, got very itchy too and scalp and forehead broke out. The gastroenterologist (saw him 15 March) told me I could go gluten free until before the endoscopy as it's such a long wait. I've been gluten free since 16 March. He said I need to do 6 weeks of gluten pre-endoscopy but around the blood test, I only managed 10 days, then a one week break, then 14 days. I kept going after the blood test as I naively thought the waiting list wasn't that long for endoscopy. I don't think I'll reintroduce gluten before the endoscopy as I've been gluten free now for just over 3 weeks and starting to feel better again. I still have some symptoms of poor absorption so being investigated for exocrine pancreatic insufficiency. I now don't care much about being officially confirmed as coeliac because I'm happy to stay gluten free, it's not difficult and I don't need confirmation to be strict about it. I did make one tiny mistake about 10 days in, used a Schwartz spice mix that had barley in it and had diarrhoea the next morning. Cupboards were then scoured out to make sure everything with gluten was gone, and my husband isn't bring gluten into the house anymore either. The problem with going gluten free while waiting for endoscopy is 1) you'll feel better and just want to get on with life 2)symptoms are likely to be even worse when gluten is reintroduced after a long break and you might not manage to stick 6 weeks of it. Hopefully testing is going to come along soon that doesn't require gluten exposure, which will probably mean a lot more people being diagnosed. I'd say that'll mean the NHS will withdraw funding for gluten free prescriptions, so really, there won't be any advantage in having an official diagnosis, as long as your doctor keeps an eye on your blood tests and you get regular check ups.

[Ffion2 in reply to gooseberryrose]

Thank you so much for this - I really thought I was going bonkers. I decided yesterday I just couldn't do it any more and I've taken myself off gluten. I don't mind not having the right 'label' but something that's obviously doing that much damage can't be good, endoscopy or not. I've dithered, but the OH is in the middle of chemo, and I'd got to the point where I wouldn't be rational enough to drive, so that made my mind up. My GP thinks I'm imagining things anyway ... she'll probably be glad I'm not bothering her with it. She still has to determine the reason for ridiculously high IgM levels and low IgA ... I'm not holding my breath!

You've just made me sigh with relief!

[Penel in reply to Ffion2]

Hi Ffion, glad to hear you have managed to make a decision. You'll not be surprised to hear that many "posters" on here have said that their GP thought they were just making up or imagining things, or that they were merely depressed.

Hope you feel better soon and that your husband gets through chemo ok.

[Ffion2 in reply to Penel]

Thank you for the thoughts. I can't believe how hit and miss it is with GPs. Mine looks at me as though I'm absolutely barking. She told me last week that if I went on a gluten free diet without being diagnosed with coeliac then I would increase my chances of stomach cancer. I've been rocking gently ...

[Penel in reply to Ffion2]

Good grief! I'm afraid your GP has been reading The Daily Mail, which carried this story about a month ago (It related to people eating a lot of rice products).

Stick to your guns. Read Coeliac UK website, if you haven't already, there's a lot of information out there. You will probably end up more informed than your GP. Make sure you get your blood test results. Good luck.

[Ffion2 in reply to Penel]

Why wouldn't surprise me if she believed the Daily Mail? Thank you. I've had a vaguely normal day today on the ratty front and it's such a relief I can't tell you. I was a bit scared to be honest, about just how angry I was.

[jill55 in reply to Ffion2]

I'm like that when I get glutened. I have to go to bed or I fear I could really do some one /thing damage!

[Ffion2 in reply to jill55]

Isn't it terrifying. I'm sorry you get it too and thank you so much for that. I honestly thought I was on my own.

[gooseberryrose in reply to Ffion2]

So glad if I was able to help a little. I hope it'll be encouragement to you that I'm feeling a lot better with gluten out of my life for good- I hope you will feel better soon! Sorry that you haven't had good support from your doctor, I have to say mine has been great and has noted on my medical record that I'm basically an unconfirmed coeliac so I'm getting all the right follow up. It's terrible there's such differences in service. Hope your OH gets on ok with the chemo

[Ffion2 in reply to gooseberryrose]

Thank you, you did help a lot. It's just so reassuring to know that other people out there know what it's like. And people are so generous with their time, explaining everything - I'm really grateful x

[Venetia]

It still seems so wrong that to get a diagnosis people have to do a damaging 6 weeks eating gluten, how can this be good medicine ?