My story and how long do I need to eat gluten before biopsy?

[Abi_97]

Hello,

A year ago I fell ill I couldnt shake off this nausea from my virus and I was losing lots of weight (I was originally 59kg) so much the doctor thought I was bulmic I got tested for celiac and hpolyri both came back negative 🤔 then they diagnosed me with ibs and anxiety I was told to go dairy free and gluten free for a few weeks I felt like non of it worked skip to quite a few months later I was fed up I decided to cut out gluten again but for longer its been nearly 5 months since then my nausea eased up a lot but I still get it occassionally (it comes in flares) and upper stomach pains everyday 😭 I thought I had steadied my weight though but in november I was 52kg then at the start of January I was 48kg during christmas time I had accidentally ate a chocolate with barley in I dont know if it was because of that or not (I had a lap for endometriosis november time) 😮 I'm not very careful in the sense I eat stuff that is produced in the same factory as gluten and I share a toaster etc could my stomach be very sensitive to gluten and still causing me stomach pains? 🤔 I have an emergency upper gastro appointment next thursday should I start eating gluten if they decide to send me for biopsy for that? 😮 Is it safe to do that when I accidentally ate the barley I swelled so much and struggled to breath (I might of been panicing) ? There a chance its crohns because it runs in my family but does it sounds like it could be celiac? 😮Photo bellow of my swelling (bottom one is before)😮 Thank you 😮

[Maur-een]

It does sound like your intolerant to something. On a gluten free diet you mustn't have any gluten at all. I can't have wheat gluten barley or Rye. You can suffer with bloating and other symptoms although I didn't. I would guess you probably have symptoms of it in your bowel which would show with the camera. Chroans

[Abi_97 in reply to Maur-een]

Thank you for the reply 🤔 I dont really have gluten per say so I dont understand why I still get nausea and stomach pain could it damage my stomach so much? 😮

[Maur-een in reply to Abi_97]

Any gluten wheat barley or Rye in your diet and it makes your body produce antibodies because your body thinks it's under attack. It makes you produce mucky stuff that block the villi in your intestines that absorb nutrients from your food. I wasn't absorbing much at all and was constantly hungry, having bouts of nausea and the shakes. My calcium levels were very low, despite eating calcium loaded foods. I now have thinning of the bones. It can leave you higher risk of bowel, or stomach cancer... I avoid gluten and if I'm in doubt I don't eat it. I try to have a balanced diet.

[Abi_97 in reply to Maur-een]

I never eat gluten just there is crumbs where I prepare my food I was just wondering if that can cause random pains 😮 I just ate barley by accident once 😂 Oh dear that sounds awful 😢 I'm sorry 😢

[Maur-een]

Yes even a few crumbs from normal bread can cause a reaction. My grandchildren always leave crumbs when they toast normal bread so I have to be careful.

[Abi_97 in reply to Maur-een]

Wow 😮 I will have to see what my upper gastro doctor says 😮 Thank you though

[Maur-een]

You'll have to let me know what they say x

[Penel]

Hi

Hope you can get some answers from the consultant. As others have said, even a very small amount of gluten can cause an attack.

The recommended length of time to eat gluten before a biopsy is 6 weeks.

If they decide that it’s IBS , perhaps have a look at the low Fodmaps diet. A dietician can help you sort this out.

[Abi_97 in reply to Penel]

Hopefully 🤞🏻 I'm just worried I will have a bad reaction and loose more weight 😢 I dont think its ibs because I've lost so much weight if its not celiac its either ibd or gastroparesis or my endometriosis has got worse 🤔

[angelias]

Hi Abi. Make sure you do eat enough gluten before your biopsy. ..or if in doubt do ask the hospital dpt carrying out the medical examination, as some GPs are not always well informed. Wish you the best

[Abi_97 in reply to angelias]

Thank you dont worry I will not sure whether they are going to test for celiac yet but if I am I'm hoping I wont lose anymore weight eating gluten again 😮