TAKING THE GLUTEN CHALLENGE- THE CHRONIC ELEPHANT BLOG

When I was tested for coeliac, I was already on a gluten free diet, so unbeknown to me at the time my negative test results were completely unreliable.

However, when I found this out I decided against taking ‘the gluten challenge’ and asking for a retest, because I don’t know that I would gain anything from knowing definitively if I am coeliac or rather have a non coeliac gluten intolerance. The only treatment for both is a gluten free diet, so a differential diagnosis would have no practical implications.
 
InitialConditions said:
I've had a coeliac screen which came back negative, but am so tempted to try gluten free again for a month.
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A negative coeliac test (as long as you had gluten in your diet at the time of testing) means you do not have the specific gluten allergy involved in coeliac disease, however if you feel there are problems, there is still the possibility of either a wheat (as distinct to gluten) allergy or non coeliac gluten intolerance.

Presumably for people with ME, we have the same incidence of coeliac disease or of a non coeliac wheat allergy as the general population, which is relatively low. However the association of non coeliac gluten intolerance with ME does now seem to be reliably documented, so we do have a higher possibility than the general population of having gluten intolerance.

It seems to me that advice on investigating the food intolerances potentially associated with ME and any appropriate consequent diet modification should be standard practice for ME [medical management]. Obviously a differential diagnosis of coeliac disease or other food allergies contrasted to food intolerances would be part of the dealing with any identified problems.
 
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Peter Trewhitt said:
When I was tested for coeliac, I was already on a gluten free diet, so unbeknown to me at the time my negative test results were completely unreliable.

However, when I found this out I decided against taking ‘the gluten challenge’ and asking for a retest, because I don’t know that I would gain anything from knowing definitively if I am coeliac or rather have a non coeliac gluten intolerance. The only treatment for both is a gluten free diet, so a differential diagnosis would have no practical implications.
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exactly. i am familair with the shortcomings of the test. I have done a month gluten-free before - it was hard to tell if things were better or not. I felt like my stomach was little better but perhaps not other symptoms. But with the cycle that I go through it is really hard to distinguish what is having an effect or what is natural variation.

I am also tempted to try Symprove for a couple of months. Anyone tried that?
 
I have been on GF for about 3 years prior to this, although I was never really sure if it made that much difference. This Gluten Challenge has convinced me! I was so much worse within a few days and actually had new problems...

Personally I would not recommend the challenge as you run the risk of really putting your body and mind through a lot of stress. If the test had been positive I would have faced weeks of waiting for an endoscopy- with no treatment or cure at the end of it. I already have a LOAD of incurable chronic conditions where Drs have ended up telling me I just have to live with it. SORRY- RANT OVER!!!

I went to see the GP specifically to get my symptoms re Gluten on my records: I do not want hospitals or other GP's assuming I have just jumped on the bandwagon and given up gluten as a fad.
 
This is interesting:

https://www.beyondceliac.org/research-news/are-you-always-gluten-sensitive-for-life/

In fact, researchers found that gluten sensitivity may be a transient condition, unlike celiac disease, which requires life-long commitment to the gluten-free diet.

“We are still not sure about many things with non-celiac sensitivity, including whether it is a transient or permanent condition,” said Alessio Fasano, M.D., director of the celiac center and an author of the JAMA article. “Expert recommendation for non-celiac gluten sensitivity treatment is that the gluten-free diet should be followed for 1 to 2 years before retesting gluten tolerance.”
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Also interesting! Couldn't see a date on this but it suggests that coeliac patients have a detectable immune reaction to gluten within two hours of exposure, in which case what's the point of making sick people make themselves sicker by eating gluten for up to 8 weeks for a test?

Not also the telling, “For all the years that we’ve known about celiac disease, persons have told us that they had these acute reactions, but many experts in the field dismissed them as being just in the person’s mind,” says Anderson. “Here we are now, a hundred years after celiac disease was discovered, suddenly discovering, yes, the patients were right.”

o_O

https://celiac.org/glutenexposuremarkers/

Though a promising drug failed in clinical trials last year, data from the research provides critical new insights into celiac disease. When patients are exposed to gluten, they show an immune reaction within two hours, more quickly than previously believed. Even the symptoms are different from what many expect. Robert Anderson, MD, PhD, a former lead researcher on Nexvax2, says this is a wakeup call that drug research may be testing patients the wrong way.

Most patients predicted that their worst symptoms when exposed to gluten would be classic lower digestive problems like diarrhea, bloating and cramps. However, none of these occurred during the acute immune responses observed by Anderson’s team. Instead, patients experienced nausea and vomiting. Anderson describes them as, “acute food poisoning symptoms that are early in onset,” and relatively severe.

“For all the years that we’ve known about celiac disease, persons have told us that they had these acute reactions, but many experts in the field dismissed them as being just in the person’s mind,” says Anderson. “Here we are now, a hundred years after celiac disease was discovered, suddenly discovering, yes, the patients were right.”

“For all the years that we’ve known about celiac disease, persons have told us that they had these acute reactions, but many experts in the field dismissed them as being just in the person’s mind,” says Anderson. “Here we are now, a hundred years after celiac disease was discovered, suddenly discovering, yes, the patients were right.”

The celiac immune response involves t-cells, attack cells armed to target gluten. Specialized t-cells take time to activate. So conventional wisdom cast doubt on any symptoms appearing so quickly. However, the Nexvax2 research found evidence of immediate t-cell activity. In 92 percent of celiac patients tested, a protein, interleukin-2, spiked in the blood one hour after they ate gluten.
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Sasha said:
Also interesting! Couldn't see a date on this but it suggests that coeliac patients have a detectable immune reaction to gluten within two hours of exposure, in which case what's the point of making sick people make themselves sicker by eating gluten for up to 8 weeks for a test?
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When I held lectures for newly diagnosed celiacs, part of it included talking about what happens when someone is exposed to gluten by accident. Some don't feel much, others get increased symptom burden for months... though I'm not sure about the "don't feel much" patients, I wonder if they have been asked about stomach problems, not say fatigue.

One of the recent findings from the HUNT cohort study is that many pwCeliac do not present with the "classic" stomach problems, but rather with fatigue (which could be due to anemia from low iron absorption in the gut).

Google translated article about the findings: Many people walk around with celiac disease without knowing about it
 
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This is dated October 2021 and describes a gut biopsy test that seems to successfully identify coeliac disease in people who hadn't been eating gluten because 'Although most of the inflammation of the small intestine disappears on a gluten free diet, we now know that there is a permanent change to the gluten specific T cells'.

The key bit, broken up for ease of reading:
Dr Soilleux has developed a machine learning algorithm to identify people with coeliac disease, even if gluten has already been removed from their diet.

In people with coeliac disease, gluten is recognised by immune cells called T cells, which trigger an immune response leading to inflammation and damage to the gut.

Although most of the inflammation of the small intestine disappears on a gluten free diet, we now know that there is a permanent change to the gluten specific T cells.

The researchers looked at the DNA of the T cells taken from biopsy samples and, using the machine learning algorithm, successfully classified people with and without coeliac disease.

Most importantly, the algorithm correctly identified people with coeliac disease who have been on a gluten free diet for at least six months.

This is an exciting piece of research and it is hoped that with further research it could provide an improved diagnostic method which is less subjective, accurate even for people already on a gluten free diet and importantly it may allow people to adopt a gluten free diet earlier and potentially feel better sooner.

You can hear more about the research from Dr Soilleux on our YouTube channel at https://www.youtube.com/channel/UCxy5w7waAdseR1p7Iuq065w/search?query=liz
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I wrote the Blog at the top of this page in 2019. I tested negative and have been on the Cheapo- version of GF ever since. This year I have had a lot of digestive pain, and was retested. Negative.
Have been so poorly that the GP said making me do the Gluten Challenge again just isn' t viable.

I have joined a Gluten free forum and apparently people often go under the radar with both false positives and negatives.
 
I've never been through a gluten challenge.

I have had some testing for coeliac disease - a blood test, and biopsies during an endoscopy (looking at my stomach, not the other end), all of which proved negative.

I gave up gluten for five years (sometime after those negative tests), and I found it helpful, but sadly I have dropped off the wagon.

But once someone knows they get benefits from being gluten-free what is the point of doing a gluten challenge and getting a diagnosis of coeliac disease? What benefits are there in getting a coeliac diagnosis?
 
hellytheelephant said:
I wrote the Blog at the top of this page in 2019. I tested negative and have been on the Cheapo- version of GF ever since. This year I have had a lot of digestive pain, and was retested. Negative.
Have been so poorly that the GP said making me do the Gluten Challenge again just isn' t viable.

I have joined a Gluten free forum and apparently people often go under the radar with both false positives and negatives.
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Sorry to hear that you've been so poorly, Helly.

I can believe there are a lot of false negatives. The advice about how much gluten to eat for the challenge, and for how long, is all over the place. It seems to be a largely evidence-free zone, as far as I can easily see. And Dr Will Bulsiewicz, in his book 'Fibre Fuelled', says that the blood test isn't sensitive enough and that if you suspect you have coeliac, you should skip the blood test and either have the genetic test or biopsies.
 
Arnie Pye said:
I gave up gluten for five years (sometime after those negative tests), and I found it helpful, but sadly I have dropped off the wagon.

But once someone knows they get benefits from being gluten-free what is the point of doing a gluten challenge and getting a diagnosis of coeliac disease? What benefits are there in getting a coeliac diagnosis?
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What I'm reading says that if you know you have coeliac then you'll be much more motivated to properly follow a strict gluten-free diet (not everyone with coeliac has symptoms but the damage is being done to your gut as you continue to consume gluten); and I think that you might get followed up routinely for possible complications of coeliac.

In some countries (I don't know which) I have the impression that you get financial support to help you follow the special diet.

Another benefit would be that if you have coeliac, there's a much higher chance that your close relatives do too, and so you can helpfully warn them to get tested (again, they may be symptom-free but having their guts damaged).
 
Sasha said:
Sorry to hear that you've been so poorly, Helly.

I can believe there are a lot of false negatives. The advice about how much gluten to eat for the challenge, and for how long, is all over the place. It seems to be a largely evidence-free zone, as far as I can easily see. And Dr Will Bulsiewicz, in his book 'Fibre Fuelled', says that the blood test isn't sensitive enough and that if you suspect you have coeliac, you should skip the blood test and either have the genetic test or biopsies.
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For me the advantage would be getting a referral and some professional advice on my diet, as I am losing weight and having to take stronger pain medication.- neither of which I'm happy about.
Hence The Chronic Elephant Blog has gone a bitquiet atm.
 
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