Refractory Coeliac symptoms

[Musegirl]

Anyone experiencing coeliac symptoms again even with a strict GF diet, ie no grains at all...? Anyone here with RCD and how they got the gp to get you referred back to gastro? Covid is preventing much needed scans... I should be having my review...had a FIT test which came back with raised levels of blood in my stool querying my compliance with Gf diet even though I've been strict...any help or advice on what I should say to my Dr to get a proper scan/ investigation would be brilliant...thanks to much

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I have issues with coeliac symptoms returning. Also awaiting tests. Had private dietician appointment late last year and was told matter could be related to other components in certain foods causing issue - mainly lectins, phytic acid and other proteins that irritate GI tract. I've also found I've had to become more aware of ingredients that might be sneaky sources of gluten that don't have to be labelled thus, e.g. glucose, dextrose, maltodextrin, starch. All grains seem to be issue also, and rice. I've had to re-learn a lot on the risk factors including foods that are labelled gluten free don't even have to be tested for gluten, and trundling along same production line as gluten products is deemed ok. I was also told by CUK to consider SIBO (small intestinal bacterial overgrowth) - that's one of the tests I'm waiting on. It's a bad year for waiting on tests, so appreciate your frustration with this. To advise on where I am - I've found the only way I can avoid symptoms/GI pain is to have an additive free, processed food free, grain free diet, which also includes avoiding sugar and any foods that make grand claims of being gluten free. It is highly restrictive, but works.

In terms of what to say to your GP - just state clearly you need referring back to Gastro. Do not expect GP to have answers as they are poor for coeliac and dietary issues in general. NHS dieticians (if you have referral are pants also for refractory coeliac advice, in my experience), and your gastro may be at a bit of a loss as well but will be able to ensure you get proper scans/tests to rule out anything else. Be assertive in your request for referral.

[Penel]

Hi Musegirl

I don’t have your problems, but I would echo the reply from Mise. You need to avoid all ready-made gluten-free food stuffs. Apart from the “allowable” levels of gluten in many foods, many additives can also cause digestive problems. Cooking from scratch may be time consuming but it’s the best thing you can do for your health.

Good luck with sorting this out. I hope you can get a referral soon.

[essexgirl in reply to Penel]

Yh I’m with you on that , eat naturally gluten free food meat veg fruit

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I had years of apparently coeliac symptoms despite being neurotically gf. It’s turned out to be bile salt malabsorption alongside coeliac. May well not be the case for you, and you would still need referring back to gastro for test/meds but depending on your symptoms might be worth considering. Really good luck.