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how long do your glutening symptoms last?

Tillyxx profile image

hi there - I am coeliac and got glutened 2 weeks ago - bad gastro symptoms for a few days then a week of feeling hugely fed up but that has passed thankfully.

But my guts now are nowhere near as good as they were before (I also have bile acid malabsorption so there are admittedly other factors at play - tho with meds and diet I'm 99% sure that is controlled). I'm needing to take immodium daily which I haven't done for years. I'm wondering if it's likely to be still that original glutening - could the symptoms last that long (with some days better than others)?

Also, after glutening do you find you need to be really careful with what you eat generally, and if so for how long?

thanks in advance X

8 Replies

Hi Tilly,

"Also, after glutening do you find you need to be really careful with what you eat generally, and if so for how long?" Yes, exceptionally careful, and it took me 3 months. My first glutening since dx in Nov 20............

I had an accident with a toaster in Nov 21. I realised when the toast popped up that I'd put my daughter's normal bread in my GF toaster. 🤦‍♀️ Several days later I decided that I couldn't justify throwing away what was essentially a new toaster, supposed that if I used it that I might feel a bit unwell for a few days, and made 4 slices of my toast over the next 3 days. Then...........

This is what I wrote to my GP in early Feb 22, and the response was a referral back to Gastro........I'm still waiting.

"My gut symptoms have not improved since we spoke by text on 11th January, and I have been in constant discomfort/pain for over 2 months now. I am still feeling bruised down both sides, and across the lower part of my abdomen. The reflux has subsided, it's still there, but not burbling up with every sip of water now, although I am still belching a lot. I’m still taking the PPI’s."

During this time, I also did things like cut out yoghurt/tried lacto free milk etc ., and stopped taking Iron & B Complex ............all of which may, or may not have helped.

I am pleased to say that I am better now, and have gradually added back the things I eliminated, and stopped the PPI's, but it took a full 3 months. I also put in a SAR request for a copy of my biopsy results (which I'm still waiting for), 'cos they don't always tell you everything believing that it will resolve itself, when maybe it needs a little help.

PPI cause gastro issues. It may be those, and not the after-effect of gluten.

Hi Benjamin,

I hope that you are well on this sunny day.

I'd been on PPI's since 2009, when dx with a fixed hiatus hernia (upper endoscopy, barium meal & MRI).........and apparently quite a lot of acid .

In the ensuing years every time I saw my GP with gut issues, the problem was dismissed as related to acid reflux. At various points the 30mg lansoprazole was increased to 60mg until at some stage, (I can't remember when, but certainly a number of years) the 60mg became permanent.

That is until Nov 2020 when GP's weren't seeing patients f2f (actually, this hasn't changed has it), but sending everybody for blood tests, and I was re-tested for coeliac......+++ positive. I'd previously been tested in 2007 when dx with autoimmune hypothyroidism, and assumed that was negative as I didn't hear otherwise. It is also possible that the GP missed putting it on the blood form...........we all can make mistakes.

After a short roam around the internet in Nov 2020 I immediately dropped the PPI to 30mg, and when I saw Gastro in March 2021, I was told to stop them completely before endoscopy. This would also enable them to determine if my acidity was still high. Unfortunately, I didn't get an answer about the acidity............I think partly due to the endoscopy happening about 10 days after the gastro consult, but more to do with the NHS trying to cope with Covid. At my endoscopy appointment the clinician performing the procedure hadn't received any instruction/information re my case, and to my astonishment had to ask me what I was there for. Sadly, I was taken unaware (also at death's door with acute kidney injury) and didn't think to ask about acidity, so I doubt this was tested/recorded. So, I learned to make sure that all boxes are ticked in future.

I have no idea whether my particularly horrid 3 months had anything to do with the toaster incident, but I can without doubt confirm that the PPI's which I started taking about 2- 3 weeks in, helped the horrendous reflux. I'm still off them, and fingers crossed will remain so.

I suppose the only way to find out what our personal glutening symptoms are would be to ingest some on purpose, but ...........I'm not at all temped to find out......

Take care

Were you aware of the link between PPIs and kidney disease? I don't mean to do down your positive experiences with PPIs but it just seems that doctors prescribe without determining the underlying cause, knowing that all meds come with risk. I've had GPs in the past try to fob me off with PPIs, until I determined myself that gluten was the issue. Never actually took the PPIs so not aware if they would have helped. It was a long journey to getting diagnosed for coeliac.

Oh gosh, I wouldn't want to come across as an advocate for PPI's............. especially on this forum where there are links between PPI's/osteoporosis and coeliac/osteoporosis.

Yes, I am now acutely aware that many meds can affect kidney function....It's the 3rd biggest cause of AKI. The one that did it for me was a blood pressure med, which is often the case. The GP who prescribed this med told me "The good news is, you don't have to have a blood test 2 weeks after starting this one." 2 weeks later, I was waiting to hear if I needed to be admitted for dialysis. I was very lucky that my kidneys recovered.

Unfortunately for me, having the hernia and taking heart meds are both big indicators for needing PPI's, so I don't think that I will be able to avoid them completely in the future, but if I do need them, I will try my best to take them for the shortest possible time.

Jeez, you have been through all the mills! Really sorry to hear that happened, and so quickly within 2 weeks. Dreadful. Glad to hear you made a full recovery from that.

Hi Tillyxx,

So sorry to hear you have been glutened. Unfortunately, it has a knock on effect to everything (all systems in the body).

Damage to gut, the brain can become rather unhappy. Damage to gut the endocrine system becomes unhappy (thyroid as an example becomes particularly not happy). It goes on. I’ve read some medical literature that it can cause gut dysbiosis, so the bacteria are upset.

Unfortunately, we are all different. I feel length to diagnosis makes a huge difference. Are any of us offered a repeat biopsy to see if we have healed ?

Also, you have bile acid malabsorption so that’s another factor.

(I’ve had salmonella, campylobacter and norovirus and now battling small intestinal bacterial overgrowth. So, it’s fun and games).

Sorry, it’s quite a politician’s answer but yes, always try to be careful because it is gluten is our kryptonite.

Best wishes.

Tillyxx profile image
Tillyxx in reply to Narwhal10

Thanks narwhal. Actually i did get a repeat biopsy (a year or so after diagnosis) which showed much improvement but still damage. A dietitian I saw shortly after that in the quest for the BAM diagnosis said she would be asking for a follow up one if she were me. But then came covid … maybe I should start the battle for it. Feel rather knackered at the prospect tbh. Thanks again.

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