eating gluten prior to biopsy

[lauram1978]

Hi, I was diagnosed with coeliac disease a few years ago during covid. At that time (lockdown), the second stage of diagnosis was suspended. In my case, my blood results and the fact that I have first degree relatives with coeliac disease and I also have thyroid disease all combined to mean there was enough evidence to confirm diagnosis without biopsy. I have been following a gluten free diet for a couple of years now and feel much better. However, gastro referral has finally come through and consultant has advised I do in fact need the biopsy. He has advised eating gluten again for 6 weeks prior.., I started about 2 weeks ago and symptoms are awful! Have been to pharmacy to see if there is any over the counter medication I can take in the short term to alleviate the bloating and nausea but they are reluctant to recommend anything as it may interfere with the biopsy. Can anyone offer any advice? Anything I can do/take to ease symptoms until after biopsy? Thanks ☺️

[BabsyWabsy]

What a dilemma. Should they be asking you to make yourself so ill? Do you have other responsibilities such as caring for children or a relative, because this will be impacting them too. Isn't it enough that eating gluten is making you unwell, and when you don't eat it you are OK? Why do you need the biopsy at all? I am told that wheat is more potent than barley and rye. If this was me, I would decline the biopsy.

[CATRYNA49 in reply to BabsyWabsy]

My thoughts exactly. I was diagnosed gluten intolerant 13 years ago and at that time I went gluten free and it made a huge difference. When I diagnosed myself for the Celiac skin disorder Dermatitis Herpetiformis or DH, I went completely grain free, soy free, yeast and mold free, and eat nothing high in iodine. I have never had a biopsy. Sometimes we have to make alternative decisions for ourselves. outside the narrow thinking of overzealous doctors, in order to safeguard our health.

[BabsyWabsy in reply to CATRYNA49]

I completely agree. Is this a medic trying to dot the i's and cross the t's? I have never had a biopsy either. I have a wheat allergy and did make an effort to eat barley and rye (which I can tolerate) early last year ahead of a blood test for coeliac. My iGA went up, but not to diagnostic levels. At the time, my husband was very unwell, so I could not be out of action. You also have DH, what more evidence do they need? Is iodine a trigger for you? Most women in UK are deficient in iodine according to Dr Craig Rose, AKA Dr Seaweed.

[CATRYNA49 in reply to BabsyWabsy]

Most definitely iodine is a trigger, as bad or worse then being glutened. I'm in the US, not UK, but the same is true of iodine in America. I also have Hashimotos and that is how I found out about the DH. My homeopathic doctor advised me to take Selenium previous to the Iodine supplement, but as soon as I took the iodine, I broke out in hundreds of itchy blisters from waist to scalp. After doing research, is when I discovered that I also suffered from DH and had since the early 70's. So, having diagnosed myself, I further cleaned up my diet to control the DH outbreaks. I still always have a few at any given time, but at least it's not dozens. I'm fine with that. You can only do so much.

[BabsyWabsy in reply to CATRYNA49]

Sorry, I didn't realise you were in US. Is the doc wanting to make you eat gluten so he doesn't get sued for not completing testing?

[lauram1978 in reply to BabsyWabsy]

OP here. I’m in the UK. Diagnosis for coeliac disease was made by the GP, based on blood tests as my antibodies were through the roof and the other factors which are linked (family history and other autoimmune conditions). Usual next steps are for GP to refer to specialist to complete biopsy to confirm the result. NHS were not following up with biopsies during covid, due to the pressure on services this was one that was suspended… but it seems that since hospitals have started to return to usual service, they now want to confirm the diagnosis and check for any damage to small intestine so I’m eating gluten again just for 6 weeks prior to the biopsy, and feeling the side effects!

[CATRYNA49 in reply to BabsyWabsy]

No doctor advising me to eat gluten for further testing. I would refuse anyway as I have already proven to myself that I am indeed Celiac. I already refuse taking statins for my supposed high levels of cholesterol. The addition of an iodine supplement was to give support for my thyroid, because of the Hashimotos, but it created more of a problem with the Celiac skin disorder DH or Dermatitis Herpetiformis. I eat eggs produced from our own chickens, in the hopes of getting enough iodine.

[BabsyWabsy in reply to CATRYNA49]

I have never heard of this with iodine. Is it a symptom of your Hashi's?

[Researchfan]

Hi. Sympathies.

Perhaps the GP can prescribe an anti-sickness tablet? That won’t alter antibodies production if you have coeliac disease to detect it.

The only thing that slightly helped me when doing a gluten challenge under gastroenterologist to rule out coeliac disease was taking an antihistamine.

I don’t know whether it would work for you though.

I have allergies too and wheat allergy so might be why it helped a bit.

It can certainly help with nausea anyway and if it does help it confirms you likely have histamine issues which is helpful to know when figuring out the best diet. I follow a personalised low histamine, strict gluten and wheat-free, cows milk free diet (it took awhile of elimination diets to figure stuff out).

The gastrointestinal tract is or can be affected by histamine intolerance.

People with coeliac disease even more susceptible to histamine sensitivity too apparently.

The foods matter dot com website is invaluable in the UK and has loads of free info.

Good luck and hope you get a clear answer.

[Cobham]

I refused to do it... "first do no harm" said I and left. The first biopsy was being criticised as not enough samples taken but that surgeon then said he could see the flat villi and to go GF immediately and not wait for lab results. He was a general surgeon related to my GP but not a gastroenterologist.

[hardtousesit]

I refused a similar test No way can I tolerate it that long.