Coeliac disease is not so straight-forward

You can be diagnosed with coeliac disease, or have tests which give indications that you may have it; but that does not necessarily mean that you actually have it.

Or, if you do, just by going on a gluten-free diet (GFD) you may not solve the problem.

With celiac disease, gluten protein encourages your body’s immune system to attack the lining of your small intestine, damaging the intestinal villi, by wearing it away. Whilst some body parts can grow back (hair, nails, skin), others won’t (missing digits, limbs). It turns out that the stomach villi will not necessarily grow back either; although, children have a better chance with this happening.

“in a few people, even a strict gluten-free diet fails to heal the villi at all. In these rare cases, doctors will diagnose refractory celiac disease and take alternate steps, including medication, in an effort to calm the autoimmune reaction”
How long will it take for my small intestine to recover from celiac disease?

With most people suffering from celiac disease, a gluten-free diet will enable some improvement in their condition, but not so with everyone.

“RCD [Refractory Coeliac Disease] describes when a person with coeliac disease is unwell and has persistent small bowel damage despite following a strict GFD [gluten-free diet] for at least a year. It usually occurs in people who are diagnosed with coeliac disease much later in life and it is never seen in children with coeliac disease. Fortunately, it is an uncommon condition, that’s believed to occur in less than 5% of all cases of coeliac disease.”
When the gluten free diet stops working: refractory coeliac disease

An abstract on the US National Library of Medicine site says that “Complete normalization of duodenal lesions is exceptionally rare in adult coeliac patients despite adherence to GFD, symptoms disappearance and negative CD related serology.” By the way, if you are going to look at this process, the same abstract says that “Control biopsies are mandatory to identify lack of response to gluten-free diet.”
Complete recovery of intestinal mucosa occurs very rarely in adult coeliac patients despite adherence to gluten-free diet

An article from the University of Chicago says “While healing may take up to 2 years for many older adults, new research shows that the small intestines of up to 60% of adults never completely heal, especially when adherence to the diet is less than optimal. . . . The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage the intestine. . . . It can take weeks to months for antibody levels to normalize after a person with celiac disease has consumed gluten. Depending on a person’s age at diagnosis, some problems, such as delayed growth and tooth discoloration, may not improve.”
Learn more about a gluten-free diet

Dr Jason Tye-Din says:

Causes of persisting symptoms in coeliac disease include:
(i) ongoing dietary gluten exposure, whether deliberate or inadvertent (the most common cause),
(ii) having an incorrect diagnosis of coeliac disease (which means the GFD is the wrong treatment!),
(iii) the presence of irritable bowel syndrome, which is often exacerbated by foods rich in fermentable carbohydrates (FODMAPs), other food components, or occasionally small intestinal bacterial overgrowth,
(iv) microscopic colitis (an inflammatory disorder of the colon associated with coeliac disease),
(v) pancreatic insufficiency (a deficiency in digestive enzymes that can be associated with coeliac disease),
(vi) the presence of other co-existing gastrointestinal problems such as inflammatory bowel disease, and
(vii) refractory coeliac disease (RCD).

When the gluten free diet stops working: refractory coeliac disease

An article from The American Journal of Gastroenterology says “Up to 95% of CD cases diagnosed during childhood may have complete intestinal mucosal recovery within 2 years after starting a GFD.[8] The rate of mucosal recovery after treatment with a GFD in adults with CD is less certain.”
Mucosal Recovery and Mortality in Adults with Celiac Disease After Treatment With a Gluten-free Diet

Another article says “For healthy individuals without celiac disease or gluten sensitivity (where their bodies are producing antibodies against gluten), the damage to individual cells and the junctions between them that can be caused by gluten is relatively fast to heal, anywhere from a few days to 3 weeks. . . . For those with celiac disease, one study showed that only 66% of patients had a normal intestinal biopsy after 5 years on a gluten-free diet 6. This means that even after 5 years, 34% of Celiac Disease sufferers had not recovered.”
How Long Does it Take the Gut to Repair after Gluten Exposure?

Mandy King writes “Though gluten-free, many of these foods are still very inflammatory as they contain high amounts of sugar, refined grains, bad fats, and dairy. So, even though you may have cut out gluten, the gut has a hard time healing when it continues to have to deal with these inflammatory foods.”
She suggests getting probiotics and “Following an anti-inflammatory diet will also help the body’s gut to repair itself. This includes a diet primarily based on vegetables and fruit, lean protein like salmon, and good fats such as flax seeds. Many herbs are beneficial for inflammation, including turmeric. Avoiding dairy can really help, and also avoid foods that are processed, high in sugar, and have bad fats (like corn, safflower, and soybean oil).”
Why You’re Not Healing Despite Going Gluten-Free

Jordan Reasoner says that inflammatory markers were present in most patients, even after a GFD, and that “Following a gluten-free diet is a requirement for treating this autoimmune condition . . . but you can’t stop there. This evidence clearly shows that only following a gluten-free diet doesn’t fix leaky gut, gut inflammation, or a damaged gut lining”.
The Gluten-Free Lie: Why Most Celiacs Are Slowly Dying

He also says

“Most cereal grains contain a toxic protein called “prolamines,” which are knurly, tough proteins that humans can’t digest. The research is very clear: we aren’t equipped to “digest” or break down prolamines small enough to absorb any nutrients . . . These proteins irritate the gut lining and sneak their way past the intestinal wall in humans and animals that eat them. Gliadin is the prolamine in wheat, but other cereal grains common on the gluten-free diet have similar proteins that also cause problems:
Zein, the prolamine in corn, has been shown to be problematic for Celiacs[3]
Avenin, the prolamine in oats, triggers a powerful inflammatory response in Celiacs[4]
Orzenin, the prolamine in brown rice, can cause inflammation in the gut of children[5]

The Toxic Truth About Gluten-Free Food and Celiac Disease

And he attacks soy and sugar as well:

Here are the 4 main problems with soy in regards to Celiac Disease:
Soy screws up your hormones because of the presence of phytoestrogens. This is important because these phytoestrogens are linked to cancer growth and infertility problems. Your hormones need to be working correctly to recover from illness.
Soy messes up your thyroid. We already covered that if you have Celiac Disease you’re chances are extremely high of getting other autoimmune conditions of the thyroid (like Graves Disease). The same phytoestrogens messing with your hormones are also implicated in hypothyroidism and potentially thyroid cancer[11].
Soy is high in phyates, which means it robs you of valuable minerals like calcium, magnesium, zinc, and iron.[12]
Soy increases the need for more vitamin D, which we already know contributes to leaky gut.

The most common sugar consumed in the standard gluten-free diet is sucrose (or table sugar). Sucrose is made-up of one glucose molecule and one fructose molecule bonded together to create a disaccharide (2 sugar molecules). Sucrose gets broken down by the digestive process into mono-saccharide molecules to be absorbed by the gut.
Here’s the catch: the main “splitter” for these chemical bonds is the micro-villi, which we just discussed are damaged and not able to do their job. This leaves us with a surplus of sugar molecules hanging around in the intestine feeding bad bacteria

The Toxic Truth About Gluten-Free Food and Celiac Disease

He recommends a Specific Carbohydrate Diet, which is “a group of foods which are grain-free, sugar-free, starch-free, and unprocessed”.
What is the Specific Carbohydrate Diet?
And see the Legal/Illegal List.
Some interesting links:

For general interest, here’s a video of some doctors talking about healthy eating: Sugar, Gluten, Paleo, Vegan: 3 Doctors Debate The Best Way To Eat.

It causes lethargy and stomach problems but most people with coeliac disease are unaware they have the condition . . .
“We do not recommend a gluten-free diet without the blood test and a small bowel biopsy first to confirm coeliac disease.”
Ms Watson said coeliac disease was a chronically undiagnosed condition and not enough GPs had it on their radar. . . .
According to Coeliac Australia, undiagnosed coeliac disease is associated with a fourfold increased risk of premature death, a threefold increased risk of osteoporosis and some forms of cancer such as lymphoma.

Living with coeliac disease

A forum post which talks about symptoms such as “tiredness, anxiety and brain-fog, all of which got increasingly bad during last spring (to the point where I was feeling sick when eating, feeling shaky, uncoordinated and, a lot of the time, almost ‘drunk’ with brain-fog and lightheadedness). I went gluten-free about 2 months ago after lots of internet-browsing, and so far the bloating/D have disappeared, the anxiety and brain-fog have decreased, and I feel better within myself than I have for years!”
Post-Gluten Recovery Time And Fatigue
[on the Celiac.com Celiac Disease & Gluten-Free Diet Forum]

“We have always had small canine teeth and lacked strong claws, reason those who think humans are natural herbivores. But scientists can tell whether our ancestors ate meat by analysing their bones and, says Cordain, “in the bones we dig up from Africa from two million years ago, and from Neanderthals in Europe, and Homo erectus in Asia, there’s not a single exception. They were all omnivores and ate a lot of meat. Zuk also mentions one anthropological theory: that before he were hunters, we scavenged other animals’ prey.”
Back to our roots: would humans be better off eating a paleolithic diet?
Back to our roots: would humans be better off eating a paleolithic diet?
Some general links:

Coeliac Disease

Don’t Make These 5 Mistakes If You’re Going Gluten-Free

The Gluten Free Diet

Gluten-free diet: What’s allowed, what’s not

* Coeliac Disease Diet Sheet

What can I eat?

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