Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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


Leotto

Recommended Posts

Leotto Rookie

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?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



GFinDC Veteran

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! :)

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

Open Original Shared Link
Open Original Shared Link 2010 Mar;9(3):318-30. doi: 10.1016/S1474-4422(09)70290-X.

Gluten sensitivity: from gut to brain.

Open Original Shared Link

Open Original Shared Link1, Open Original Shared Link, Open Original Shared Link, Open Original Shared Link, Open Original Shared Link, Open Original Shared Link.

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.

Leotto Rookie

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

 

Ennis-TX Grand Master

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.

Leotto Rookie

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!

 

GFinDC Veteran
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.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,993
    • Most Online (within 30 mins)
      7,748

    Whitney A
    Newest Member
    Whitney A
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Okay, it does make sense to continue the gluten challenge as long as you are already in the middle of it. But what will change if you rule it out? I mean, you have concluded that whatever label you want to give the condition, many of your symptoms improved when you went gluten free. Am I correct in that? According to how I understand your posting, the only symptom that hasn't responded to gluten free eating is the bone demineralization. Did I misunderstand? And if you do test positive, what will you do different than you are doing now? You have already been doing for years the main thing you should be doing and that is eating gluten free. Concerning how long you should stay on the gluten challenge, how many weeks are you into it already?
    • WildFlower1
      I mean that I will be re-taking the celiac blood test again while I am currently on the gluten challenge right now, but not sure how many weeks more to keep going, to ensure a false negative does not happen. Thank you.
    • WildFlower1
      Thank you for your help, I am currently in the middle of the gluten challenge. A bit over 6 weeks in. At 4 weeks I got the celiac blood tests and that is when they were negative. So to rule out the false negative, since I’m in the middle of the gluten challenge right now and will never do this again, I wanted to continue consuming gluten to the point to make sure the blood tests are not a false negative - which I did not receive a firm answer for how many weeks total.    My issue is, with these blood tests the doctors say “you are not celiac” and rule it out completely as a potential cause of my issues, when the symptoms scream of it. I want to rule out this 30 year mystery for my own health since I’m in the middle of it right now. Thank you!
    • trents
      I am a male and had developed osteopenia by age 50 which is when I finally got dx with celiac disease. I am sure I had it for at least 13 years before that because it was then I developed idiopathic elevated liver enzymes. I now have a little scoliosis and pronounced kyphosis (upper spine curvature).  All of your symptoms scream of celiac disease, even if the testing you have had done does not. You may be an atypical celiac, meaning the disease is not manifesting itself in your gut but is attacking other body systems. There is such a thing as sero negative celiac disease. But you still have not given me a satisfactory answer to my question of why do you need a differential dx between celiac disease and NCGS when either one would call for complete abstinence from gluten, which you have already been practicing except for short periods when you were undergoing a gluten challenge. Why do you want to put a toxic substance into your body for weeks when, even if it did produce a positive test result for celiac disease, neither you or your doctors would do anything different? Regardless of what doctors are recommending to you, it is your body it is affecting not theirs and they don't seem to have given you any good justification for starting another gluten challenge. Where you live, are doctors kings or something?
    • WildFlower1
      Sorry to put it clearly, at 15, infertility started (tried to word it nicely) meaning menstruation stopped. Which is in correlation to celiac I mean. Thank you. 
×
×
  • Create New...