Wheat intolerant but not coeliac

Wheat intolerant but not coeliac

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daytonavrs

Original Poster:

863 posts

99 months

Saturday 14th December 2024
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Has anyone found out (and somewhat later in life) that they have dietary issues / allergies convincing yourself its issues with wheat/gluten but nothing confirmed on paper?

Despite recent test I've not been confirmed coeliac although I was only having "some" wheat stuff rather than going totally mad with dosing myself,
I only had chance to do about 2 weeks of moderate wheat balanced into my diet before the blood test though if it made a difference.

I didn't go overboard as I hated the feeling it was having on me and trust me when you break through the other side you just don't ever want to go back to that place.

I get unreal itchy skin, like burning almost, water retention and bloating also IBS, at one point my leg became infected and I was a little worried I might become gangernous and lose it (I'd share pic from a year ago but its gross) - but all so much better now.
In my past before this I had times where I was up in the middle of the night just having a shower trying to relieve my whole body felt like it was alive itching like hell, and wondered what the hell was wrong with me. Was I getting the dreaded "C".

All this with no tested confirmation of coeliac more recently though. I don't drink normal beer get the more expensive gluten free etc.
Seems to work and a lot happier. Just seems to be more "undocumented" or unproven but I wondered who else had similar not medically confirmed issues ?
I also had chance to have a real empathy on the kinds of issues people have with skin or other health issues.
Be kind to people suffering skin issues or in fact any health issues I felt after this.

smifffymoto

5,064 posts

220 months

Sunday 15th December 2024
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I have similar ,I can eat it but not over do it.

If I’m careful I don’t get the trots or bloating.

Bill

55,776 posts

270 months

Sunday 15th December 2024
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I've just had a quick read about the sensitivity of the testing and it's possible to have coeliac despite a negative test particularly if you were avoiding gluten in the run up.

C70GT

330 posts

102 months

Sunday 15th December 2024
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The gold standard for Coeliac Disease is blood test and endoscopy biopsy of the villi. Coeliac is very difficult to diagnose in the early stages as there are so many different conditions that can have similar symptoms. Also different folks can often present different symptoms, making diagnosis more difficult - hence the blood test and biopsy. It is also important to keep gluten in the diet before testing as removing gluten prior to test will skew the results. It is possible to have a wheat/gluten intolerance without being coeliac and some folks with coeliac disease experience skin conditions called Dermatitis Herpetiformis - spelling?

I was diagnosed with Coeliac 19 years ago following a blood test and endoscopy biopsy. Removed gluten from my diet and within 24 hours felt so much better. It took 9 months to fully recover and regain weight and strength.

Sheets Tabuer

20,292 posts

230 months

Sunday 15th December 2024
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I have the same, thought it was gluten intolerance but I can eat pasta, bread though, I can eat a slice or two fine but any more than that and it's intestinal spasms and Mr whippy machine on the loo.

Onions and tomatoes do it too so I'm thinking IBS or something.

GliderRider

2,691 posts

96 months

Monday 16th December 2024
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Bread, biscuits, curry (probably exacerbated by popadoms and naan bread) all leave me feeling nauseous, particularly if eaten in the evening. Puff pastry is particularly bad for it. The nausea feels like acid reflux, but that can be cured with a glass of water with bicarbonate of soda, whereas the gluten intolerance is not.

It seems to start at around age 50. A friend gets the same thing, as does my brother in Oz (2 1/2 years older). A neighbour, also gluten intolerant, reckons genetically modified wheat has made things worse in recent years.

Bessacarr

40 posts

134 months

Monday 16th December 2024
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Self diagnosed after suffering most of my life. Had a test I guess to see if celiac but hadn't been told and didn't know I should have eaten gluten containing food for previous 6 weeks. Results were negative so not worth doing. Wasn't prepared to repeat test in that manner.

Removing gluten is enough for me and I'm satisfied. No reactions. Occasionally or accidental intake can be managed but not too often or even twice in one week.

Strangely if tripped up and overexposed to gluten
then alcohol in terms of shorts helps !

It's a lot easier now to manage

daytonavrs

Original Poster:

863 posts

99 months

Tuesday 17th December 2024
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Great stuff glad to see its in the open with others like you here and to me the more people know of this is possible for their issues I'm glad, as at the lowest point it can really be insufferable as with all horrible skin and gut issues etc.

otolith

61,603 posts

219 months

Tuesday 17th December 2024
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Don’t have anything diagnosed, but wheat bloats my stomach and gives me the sts.

fttm

4,062 posts

150 months

Tuesday 17th December 2024
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Take a look into genetically modified wheat , causing quite a few problems for people in recent years . Doesn't effect me but just seeing it grow to 18/20 inches tall in the fields is common place nowadays , along with your type of symptoms OP . Coincidence ?

anonymous-user

69 months

Tuesday 17th December 2024
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I'm the same, although any symptoms for me tend me gut related rather than any skin issues.

Mine is fairly minor though, a switch to GF bread and pasta for the most part solves any of my issues, and I don't need to avoid gluten totally, just minimise it.