I recently had an Endoscopy. Results were small intestine is fine. I am gluten free due to pain and it has helped ease the pain.

[tvellepern]

How is it possible that gluten free diet would help if there is no problem with celiac? Can anything help an atrophic stomach lining? Doesn't the lining replace itself every few days?

[fbirder]

How do you know that you do not have coeliacs? If you've been gluten-free for long enough then the small intestine will appear normal.

Many people benefit from a gluten-free diet even if they do not have coeliacs disease. It's not because on the gluten though. Those who think they have non-coeliac gluten sensitivity (NCGS) almost certainly do not.

The scientist who first identified NCGS did so by giving people who said they were sensitive to gluten, but didn't have coeliacs, snack bars that did, or did not, contain gluten. Sure enough those who claimed to be sensitive to gluten had nasty symptoms to the gluten, not to the gluten-free. Thus NCGS was discovered.

But he was a good scientist and asked himself what else might have given the same result. There was some thought that certain carbohydrates (fermentable, oligo-, di-, and monosaccharides, and polyols - FODMAPs) might be the culprit. So the experiment was repeated on more people with self-reported NCGS.

This time the volunteers had no reaction to the bars with gluten but they did have the nasty symptoms when they ate the bars containing no gluten, but packed with FODMAPs. Thus NCGS was debunked.

Many gluten-free foods are also low in FODMAPs. That's why people who think they have NCGS do OK with a gluten-free diet. When they do eat something that is high in FODMAPs they just assume that they've been 'glutened'.

I have a sensitivity to some FODMAPs. Fructose will have me in serious trouble. Fructans (common in bread, but not sourdough) are bad in large amounts. Onions and garlic need to be carefully controlled. Some fruits are OK, others definitely aren't. Weirdly, some mushrooms are fine, others have me in cramps if I eat a small portion.

But gluten is fine for me.

So check out FODMAPs to see if that may be your problem. monashfodmap.com/about-fodm...

[tvellepern in reply to fbirder]

Thank you for your knowledgeable answer. I will read the reference you sent - so interesting!

[Nackapan in reply to fbirder]

Yrs my daughter has found this. She can eat berries but not apple fod example. It takes months to sort of out with fodmap but well worth the effort.

[Nackapan]

If it is miso is very nutritional and gives a good flavour

[fbirder]

We are currently investigating the use of asafoetida as an onion replacement for curries. Instead of garlic I've been using garlic oil (it extracts the flavour but not the fodmaps). But I've been slowly introducing ground garlic, which doesn't seem as bas as the fresh stuff.

[Sleepybunny]

Hi,

Have you had tests for Coeliac disease?

In UK, guidelines suggest two first line tests in someone with suspected Coeliac disease

1) tTG IgA test

2) Total igA test

tTG IgA checks for antibodies to gluten.

Total IgA checks who has IgA deficiency.

People with IgA deficiency will need different tests for Coeliac disease because their bodies do not make the antibodies that tTG IgA test looks for.

Did you have both of the tests above?

Coeliac Blood Tests

coeliac.org.uk/coeliac-dise...

If you had tests for Coeliac disease did your GP tell you to eat plenty of gluten in more than one meal per day for several weeks before blood taken?

One reason for a negative result in tTG IgA test is that patient was not eating enough gluten prior to test therefore not enough antibodies to gluten were circulating in blood to register a positive result.

[tvellepern in reply to Sleepybunny]

Thanks for your informative reply. I appreciate all the help.

[Leils]

I think lots of people would benefit from being gf without coeliac diagnosis. David Perlmutter estimates up to 1 in 3 people.

There are people who get neurological symptoms from gluten rather than intestinal. Plus possibly auto immune reactions.

If it gives you pain then cut it out. That's what I did for years anyway before I got a positive for coeliac. Not had an endoscopy yet so don't know what shape my gut lining is in.

I've read that the cells of the small intestine can renew in a few days but I would have thought growing whole new villi would take a bit longer. Some people say a year or two for recovery especially if not very young.

[tvellepern in reply to Leils]

Thanks for replying Leils - I have been gluten free for about 8 months and my pain level is lower but not completely gone. If villi have grown would I now be able to absorb B12 from food or tablets?

[Leils in reply to tvellepern]

The only way to know is to get b12 tested or assess symptoms over time but it is not a precise science.

I was gf for a year before diagnosis and was not absorbing b12. My levels were dropping (220 in late 2017 and 196 in jun 2019) despite eating loads of animal products and taking an oral b complex.

Could be other issues than the villi. Could be bacterial imbalance or other problem such as low stomach acid.

I've just done a gut flora test to see if that's part of it. Was pricey tho

Other than that I'll keep going with b12 jabs and gf diet and see if things improve...

[Sleepybunny in reply to Leils]

Hi,

"There are people who get neurological symptoms from gluten rather than intestinal. Plus possibly auto immune reactions. "

Coeliac UK link to info on gluten related neurological problems.

coeliac.org.uk/information-...

[fbirder in reply to Sleepybunny]

My neurologist (consultant at the National Hospital for Neurology and Neurosurgery) said that gluten neuropathy is a load of bunkum. There is only one person (plus his students) who ever publish anything on it. Nobody else can replicate his results.

I was so pleased when he said that as I'd been gluten-free for a month, because I'd heard it was a possibility. It was, perhaps, the worst month in my life. As soon as I left the hospital I went across the square to the pub for a pint of real beer and a tuna sandwich with real bread.

[Sleepybunny in reply to fbirder]

Hi,

Some articles I though might be of interest...

Article about Gluten ataxia

jnnp.bmj.com/content/74/9/1221

Article about Gluten sensitivity

jnnp.bmj.com/content/72/5/560

Article about neurological effects of Coeliac/Gluten sensitivity

ncbi.nlm.nih.gov/pmc/articl...

Brain fog in Coeliac disease

onlinelibrary.wiley.com/doi...

Neurological Effects in Coeliac disease

gastrojournal.org/article/S...

[fbirder in reply to Sleepybunny]

Yup. Written by Hadjivassiliou or citing stuff written by Hadjivassiliou.

[CatrionaNason]

If the stomach has been inflamed for years it can destroy the cells.

Depending on your symptoms, it may be worthwhile reading about Bile Acid Malabsorption. (BAM)

Gluten free diet can't hurt and you can experience if it helps or not. xx

[tvellepern in reply to CatrionaNason]

Thanks CatrionaNason, I will look it up.

[deniseinmilden]

Do any of you gluten experts have any idea why, when I tried to go gluten free I became bowel-incontinent??

If I make sure I eat plenty of bread/wheat/etc my system is fine but I get an upset stomach if I don't get enough gluten! This has been repeated too often to not be connected.

My digestion and absorption of anything was terrible but has been better following doses of nitrofurantoin and gastroenteritis!

Bonkers but so and I'd love to have any ideas why!

[Sleepybunny in reply to deniseinmilden]

Hi,

I'm not medically trained but here are a few of my thoughts....

I did wonder whether going gluten free has affected levels of certain gut bacteria?

Other ideas were perhaps you're eating less yeast when you're on a GF diet and maybe your body is having withdrawal symptoms from yeast.

Search online for articles about candidiasis, an excess of candida yeast in the body.

patient.info/doctor/candidi...

Gluten free bread etc often has more sugar, more fat than gluten bread so could your body be reacting to this?

I also wondered if it's possible to have some sort of withdrawal symptom from stopping gluten.

Another thought was whether a gluten diet had more or less fibre than a diet with gluten and if having more or less fibre is affecting bowel function.

Articles I read linked going gluten free to improvement in bowel function rather than to deterioration. See link below.

academic.oup.com/ajcn/artic...

Link to thread on Thyroid UK forum on HU about gluten withdrawal symptoms

healthunlocked.com/thyroidu...