If you have coeliac or other gluten issues, how long after cutting it out did you feel better?

[UngloriousGluten]

I have type 1 diabetes, am hypothyroid and have a heap of vitamin and iron deficiencies. Lots of fatigue and brain fog. Two of my doctors are encouraging me to stop gluten as they think I could have coeliac as it does frequently show up alongside type 1.

I've put it off and avoided it by thinking well I don't have stomach issues so probably not really coeliac...But now I reluctantly think now I should try going gluten free to see if it would help. I'm noticing some discomfort in my stomach (nothing crazy like awful pain or diarrhoea though) when I have bread.

I'd been putting the abdominal discomfort down to ovulation and period pain but now realising it's happening outside of those times too. If you have coeliac did you ever notice before if you had worse symptoms at certain points in your menstrual cycle if you had had gluten?

And how long after stopping gluten did you start to feel well again?

it affects me as soon as I eat it. I’ll feel better 2-3 days after I’ve eaten some by mistake.

If two doctors think you have coeliac disease then they should be testing you and telling you to keep eating gluten in the meantime, not telling you to stop.

It can take several weeks of notice any difference. However, if it is coeliac disease, once you cut it out and you go back, you will very quickly feel very unwell. The reaction is far worse which is why you should only cut it out after diagnosis because you need to be eating gluten to test positive.

I'm intolerant, not coeliac, but I feel better after a day or two.

Agree that you need to keep eating gluten and get a blood test, and then a biopsy of your gut before removing gluten

I've only just realised that I'm gluten intolerant. I think I have been for years, but only realised in the last 2 months when it's all ramped up a gear. I'm still very much new to avoiding gluten, so can't help much, but I can say that yes, I definitely notice it's much worse in the few days before my period starts. My chronic headaches and migraines have already massively improved.

I feel unwell within 2-12 hours after eating accidentally and better after 36 hours. I'm pretty sure I'm not coeliac as I don't get bad stomache issues, , more intolerance , I get neuro issues instead - came on post covid and doctor told me to cut gluten out as apparently number of people post 60 who it affects has gone up considerably. Same apparently with lactose

I can't remember for sure but I think within 1-2 weeks I felt completely different - I realised this was what everyone else felt like most of the time. I had just assumed everyone felt sick, bloated and had diarrhoea all the time.

I was diagnosed with coeliac about 14 years ago. It's worth noting that lack of stomach issues doesn't mean you don't have it, I found in the early days that I could eat Chinese takeaway with no outward issues at all, but the damage was still being done inside.
If I've accidentally had gluten, I'll have ulcers in my mouth within the hour and will be sick, often paired with stomach pain and upset stomach. Now it's been 14 years without gluten, if I do eat some the after effects are worse. It takes me days to recover. I had to have a week off of work once after having one bite of the wrong sandwich.
And as others have said, if you're going to be properly tested for coeliac/intolerance then cutting out gluten now won't give you accurate results.

DD has Coeliacs and as little as a crumb can make her feel poorly for up to a month. It took about 12 months of no gluten/barley/oats for her small intestine to heal. The lack of nutrients and minerals she was getting obviously had an impact on the rest of her body as well.

I've had regular blood tests for coeliac since I was a kid due to type 1 diabetes. It has never showed up on a blood test but everyone keeps telling me that that doesn't mean I don't have it! Frustrating.

I'm actually having another coeliac blood test included with my next set of labs that I'll get done probably this week, and have definitely been eating gluten - bread most days, plus non alcoholic beers a couple of times a week too which also has gluten, then all the random stuff that gluten is in where you wouldn't think it at first.

I won't go for a biopsy as it means endoscopy and anaesthesia and don't feel safe doing that with type 1 diabetes unless it is absolutely necessary with no other alternatives. So the only other way to see if it makes a difference is to eliminate it for a while I guess.

I keep meaning to do the genetics blood test to see if I have the relevant gene as I think that can be a good indicator though?

12 months to heal! Wow. I am so glad she did heal though, it sounds like she's doing much better.

It's worth noting that lack of stomach issues doesn't mean you don't have it, I found in the early days that I could eat Chinese takeaway with no outward issues at all, but the damage was still being done inside.

Yes @Ninabean17 I'm concerned about damage occurring, it is worrying.

Gosh it sounds really hard that 1 bite of the wrong sandwich made you so sick

Interesting that over 60s are being affected, I wonder why that is?

When it comes to intolerance I wonder if it is something to do with how modern grains are produced/ farmed, compared to how they once were.

it took about 6 months I think for my villi to heal