Your gastro said 'mild controlled or early coeliac'. How did you feel reintroducing wheat? Could it be that you have controlled it by voluntarily giving up wheat? Could you ask for some clarification? In general, GPs don't seem to have much interest or experience in gut issues. One admitted this to me. I have been in a similar position, couldn't reintroduce wheat because I have a diagnosed allergy, potentially anaphylactic, so I ate lots of barley, which I seem to be OK with, but it doesn't have the same impact. This produced a slight rise in IGA, but not enough for a clinical diagnosis, no follow ups have been done, IgG not tested. Maybe I should request it? The practice nurse agrees that 'something is going on', but it is inconclusive. Isn't it frustrating? I hope you get some answers.
Thanks for the reply felt a lot worse introducing wheat and better when back on gluten free diet still got the same problems I started with though. I didn’t think it was gluten that was the problem because I know what it feels like when you’ve had gluten accidentally and it was not the same. Since going back on the gluten free diet I’ve also cut out lactose that helped for 3 days then it started again. The gastroenterologist said that it all could be side effects of celiac in the letter to the gp but told my to my face it could be ibs. Got to wait now for a follow up from gastroenterologist in January but I’m not holding my breath
Lots of people with coeliac struggle with lactose too. Do you have regular milk or A2, which is much more available now? The A2 protein seems to be better tolerated than the A1. Jersey cows give predominantly A2 for reference. Good luck with your follow up. My GP has abandoned my gut issues for me to manage myself.
Thank you. I wonder if we are part of a subgroup, or if our situation is the 'norm', as our medical personal seem to have little knowledge or interest? I have long thought that in this life, we must rescue ourselves. Within this forum, there is a wealth of knowledge an experience. Seasons greetings to all.
Hi and seasons greetings. I could relate to your comments above, and can sympathise being in the position of not having a definite diagnosis. Went through a gluten challenge to rule out - didn’t get the biopsy as couldn’t complete the six weeks eating “normal gluten diet”, symptoms got too bad and was made sick. Same outcome though as gastroenterologist said strict gluten free diet! But zero follow up with GP as there was no conclusive diagnosis. As for the strict gluten free diet this helps and is far better when compared to eating gluten in the diet but I can relate to your comment about the still have problem started with, even following a gluten free diet for years. And I get what you mean when you say you know when it’s “gluten”. I have done many elimination diet to figure out what I can tolerate. Been dairy free. Low histamine. No nightshades diet. No grains. Specific carbohydrate diet. Low Fodmaps under dietitian. No gluten free oats. Then reintroduce foods. It takes weeks 😳 . This is what happens when the health care system is no help, end up going down the rabbit hole to figure it out. Recently did a private DNA test, this was enlightening for me and opened my eyes as found out got lactase non-persistence, (only about 10% of people in the UK are primary lactose intolerant. Lactose and milk is hidden in so so much!), I have moderate risk for coeliac disease and food allergy. So coeliac disease is possible and so is food allergy, which I’ve long suspected. The longer I’ve been at this health journey the more I’ve learned. My reply point here is that There’s many gastrointestinal disorders, and not just coeliac disease can cause villi blunting. Milk protein can do it too. It’s also possible to be seronegative coeliac disease (normal igAttg). Have you ever been tested for food hypersensitivity? This can be a cause too? But the mechanism may not be igE driven but a delayed allergy or non-igE mediated and elimination reintroduction is the gold standard to figure out. Something to look into when not getting well or thriving on a gluten free diet.
Thanks for the info and a merry Christmas to you will just have to see what gastroenterologist says. The one good thing to come out of this is I have found out I like Mackerel 🎄🎄
First please remember that as we are all different Coeliac affects can vary.....
I became Coeliac in 1993 when I lost a third of my bodyweight and identified the problem with a self-controlled elimination diet – and eliminated gluten. NHS anaesthetic-free endoscopy biopsy was inconclusive (as so often happens when the sufferer has already cut out gluten) and I was desperate to maintain the slight improvement achieved and declined the offer to go back on gluten for the prescribed six weeks.
In those remote times a blood test was not on offer but I got confirmation with a stool test sent to the USA and then able to get supplies of cardboard-like gluten-free products on the NHS. Move on thirty years and with daughter and grand-daughter diagnosed and confirmed with more civilised testing we all enjoy an amazing array of glut e-free foods now available.
Throughout those thirty years I have continuous bowel problems (many explosive and often unexpected and repeated toilet visits and happenings- up to 15 times a day) but colonoscopies, sigmoidoscopies have found no problem. Recently an inspired GP suggested pancreatic insufficiency could be in play – and he issued a prescription for enzymes and arranged a gastroenterologist consult that eventually yielded loads of tests and found little that I had not already worked out. Elastane level around normal, pancreas in good shape, but Selenium and B12 levels sky high so reduced them, etc.
Meantime I had boosted pancreatic enzyme supplementation and started a high dose probiotic regime and within a couple of months have normal bowel movements average twice a day and no more diarrhoea !!! I am unsure which element (cut out selenium, adding probiotics and pancreatic enzymes) has been the most important so I will carry on and banish the last thirty years to history.
Briefly – biopsies are often inconclusive, gluten is in more than just wheat, selenium has a loosening effect, microbiome is important, elastane levels are not incontrovertible, a malfunctioning digestive system can engender multiple intolerances, coeliac disease can be hereditary, pancreatic insufficiency is a known side effect of coeliac.
PS I did not die off in 1993 and ran the London marathon in 2003 - and am still going!!!!
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