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Leotto

Many neurological symptoms improving with diet, fasting, and possible celiac disease

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Hi everyone, i'm suffering several neurological symptoms as tremors (since 7 years), mood swings, disturbed sleeping, forgetfulness, concentration problems and some linked with autonomic dysfunction. On the other hand, my only GI symptoms are bloating and constipation.

Put like this it may seem that brain and not celiac disease could be the culprit; the point is many of these symptoms improve greatly with diet, and specificly with a routine of intermittent fasting, a low fodmap diet and some vitamin-dense foods (like egg yolks).

I highly suspect the presence of SIBO (small intestine bacterial overgrowth) and chronic stress as involved factors, but even celiac disease could be related, since many symptoms worsen on gluten. Actually, symptoms worsen even on rice, potatoes, cruciferous vegetables and a miriad of other foods, causing bloating and constipation. For SIBO, glucose breath test was found negative, but i may test again with lactulose breath test.

Now i'm on a gluten challenge diet, and i didn't notice a direct correlation of gluten consumption with symptoms yet, which leads me to think the problem could be related to the quantity ingested, and thus SIBO, more than specific proteins. But again, a villous atrophy impairs absorption and could favour SIBO, so i can't reach a conclusion.

I have to test 2 months more on a gluten challenge, but sustaining these symptoms is quite hard, so if i can exclude other option meanwhile it would be nice. That's why i'd like to see if others with celiac disease have experienced this kind of symptoms.

Is it possible that celiac disease would give so many neurological problems, with a little or none reaction with gluten ingestion?

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Hi Leotto,

You may actually be in the majority, having nuerological affects from celiac disease but not much in the way of digestive affects.  Below is an abstract of a paper by Dr. Hadjivassiliou a leader in the area of nuerological effects of celiac disease.  You'd have to pay to read the whole article.  Anyway, from what
I remember reading it several years ago, he tested people with nuerological issues but not much or any digestive symptoms.  But the still had celiac disease.  The immune response was attacking the brain instead of the gut.  Sometimes this is called gluten ataxia.

Your nerve issues could also be related to malabsorption of nutrients.  Without enough of certain B vitamins our nervous system has problems.

To be tested for celiac disease is normally a set of blood antibody test, followed by an endoscopy.  However is some people with the gluten ataxia affects. they found no gut damage.  Celiac can be a tricky condition to diagnose.

I had various digestive symptoms before going gluten-free.  I was sick often but sometimes felt pretty ok.  So digestive symptoms can vary day by day, and also vary greatly by person.

Welcome to the forum Leotto! :)

***********************************************************

Lancet Neurol. 2010 Mar;9(3):318-30. doi: 10.1016/S1474-4422(09)70290-X.

Gluten sensitivity: from gut to brain.

Abstract

Gluten sensitivity is a systemic autoimmune disease with diverse manifestations. This disorder is characterised by abnormal immunological responsiveness to ingested gluten in genetically susceptible individuals. Coeliac disease, or gluten-sensitive enteropathy, is only one aspect of a range of possible manifestations of gluten sensitivity. Although neurological manifestations in patients with established coeliac disease have been reported since 1966, it was not until 30 years later that, in some individuals, gluten sensitivity was shown to manifest solely with neurological dysfunction. Furthermore, the concept of extraintestinal presentations without enteropathy has only recently become accepted. In this Personal View, we review the range of neurological manifestations of gluten sensitivity and discuss recent advances in the diagnosis and understanding of the pathophysiological mechanisms underlying neurological dysfunction related to gluten sensitivity.

2010 Elsevier Ltd. All rights reserved.

Edited by GFinDC

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Yes, i too have read studies noticing the neurological effects of gluten exposure. Moreover these effects have been noticed also in non-celiac gluten sensitivity, where the villous atrophy doesn't develop but GI reactions actually occur, with manifestation of extraintestinal symptoms being also possible. One study for example noticed on the improvement of fibromyalgia with a gluten-free diet, and all of these patients had non-celiac gluten sensitivity. This meaning that gluten is very likely to be the culprit in my case.

Also it seems i can't tolerate rice and high carb foods like potatoes, even if they don't probably give me the worst symptoms; is tolerance to them something which can improve with time, once being on the gluten-free diet?

Thank you

 

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In my experience the neurological brain fog and nerve issues come in waves for a week or two even after the gluten exposure. I have a bit of a different issue with carbs in general as they tend to make me bloat, cramp, and gassy. I have found improvements by working with my dietician and eating a diet high in protein, fat, and fiber of mostly Egg whites, nuts, seeds, veggies, with small amounts of dried fruits like figs, dates, and banana chips. This along with a supplement regime has greatly improved my life to back to almost where it was before I had major symptoms.

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Thank you, this is encouraging! I think i'll be able to make most of the problems go into remission with a long term gluten avoidance. I just need the test confirmation to fully act with devotion, since i'll finally "know"!

But also, do you notice immediately the gluten exposure e.g. with GI symptoms or it is something more subtle than this? What could have delayed my diagnosis is really the fact that i don't develop sudden symptoms, but it's a "behind the scenes" process, leading to real tangible symptoms, especially neurocognitive. Otherwise i would have tested much earlier.

Thank you!

 

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13 hours ago, Leotto said:

Yes, i too have read studies noticing the neurological effects of gluten exposure. Moreover these effects have been noticed also in non-celiac gluten sensitivity, where the villous atrophy doesn't develop but GI reactions actually occur, with manifestation of extraintestinal symptoms being also possible. One study for example noticed on the improvement of fibromyalgia with a gluten-free diet, and all of these patients had non-celiac gluten sensitivity. This meaning that gluten is very likely to be the culprit in my case.

Also it seems i can't tolerate rice and high carb foods like potatoes, even if they don't probably give me the worst symptoms; is tolerance to them something which can improve with time, once being on the gluten-free diet?

Thank you

 

Hi Leotto,

I think celiacs who are new to the gluten-free diet should avoid all sugars and carbs for a few months.  Sugar and carbs feed bacteria in the gut if they are digested well.  Which is a common problem in celiac.  So they can cause bacteria overgrowth symptoms, like excessive gassiness, pain, and possibly others.  In addition while a new celiac is trying to heal their gut it isn't helpful to have lots of gas and excessive bad bacteria floating around in their multiplying like crazy.  Instead it is better to eat mostly meats, veggies, eggs, nut and maybe a little fruit.  Often the gut biome is messed up because of celiac gut damage to start.  Getting the gut biome right is important for healing and health.  Also, avoiding processed foods (packaged baked goods canned goods etc) with multiple ingredients makes it easier to avoid cross contamination issues.  It's better to cook all your own food at first so you can learn what is safe for you to eat and understand what things cause you problems.

After your gut is healed and your biome is in better shape things may go better for you when eating carbs.  I had problems with rice at first also.  But can eat it now.

I don't eat nightshades (potatoes, tomatoes, peppers, eggplant) though.  And that those are foods I haven't been able to eat without problems for years.  So it depends on the food and the reason it is bothering you if you will regain the ability to eat it.  Some food intolerances don't go away.

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