Jump to content
  • 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

Could This be Insidious Neuro-Celiac?


Xgth

Recommended Posts

Xgth Newbie

Greetings, everyone!

My name is David. I have dealt with high-functioning autism since I was a little kid. I had a healthy childhood, and then, in the summer of 2012, back when I was fifteen and a half years old, I began experiencing a weird combination of semi-mania, occasional and inexplicable brain fog, and an overall state of high energy and very strong self-confidence. However, a few months later, in September and early October of 2012, I rather abruptly stopped feeling so great, and the brain fog hit me even worse,  Anhedonia and a pervasive sense of depersonalization also began. During this short span, I began to fear that my Asperger's (which I still highly valued at the time) was somehow fading away and that I would turn into a neurotypical. But mysteriously enough, after three weeks of being in this lull, I quickly returned to a state of inner peace, good well-being, relatively high energy, and renewed ambition. Moving ahead to the spring of 2013, I made new friendships and was again in a state of near-euphoria, strength, and persistent joy. 

And then, in the early summer of 2013, the fatigue began, and the elation faded away. Initially, this fatigue was physical in nature and limited to a mild loss of endurance while going out on jogs, but eventually, by February of 2014, I was also beginning to experience mental fatigue, occasional-yet-intense depression, and a stubborn and new OCD-like anxiety about losing my own thoughts and emotions of value. As the months went by, my performance in both academics and track and field began to decline, subtly but surely. and the depression worsened. Thinking at the time that my dopamine system was underactive, I began taking the NDRI, Wellbutrin, in 2014's summer, and ultimately, my anxieties, fatigue, and depression only worsened. In the fall of 2014, I ended the Wellbutrin treatment and began taking Risperidone, which, thankfully, did quickly relieve my OCD-like anxiety and eventually my depressed mood as well. For the most part, I consistently have been on antipsychotics since then, which have kept me calm, polite, and sleeping well at night.

Nevertheless, by now, I am now twenty years old, and I now take Abilify everyday. I continue to deal with treatment-resistant anhedonia, which seems to grow a bit each day and effects me at all points in the day and night. Even my dreams seem to be devoid of much happiness (although, luckily for me, I at least rarely have nightmares). Also, for whatever little emotions I still have, I am detached from them to the point that it almost seems as if someone else inside my head is experiencing the pleasure or pain, not "me." And, finally, the chronic fatigue also continues to get a bit worse every week, more or less.

I have not dealt with any gastrointestinal issues that I am aware of, and to be fair, I also have NOT had to experience any headaches or pains from anywhere on my body, so I am not overly-convinced that I actually have gluten intolerance of any kind. HOWEVER, we have definitely ruled out Neuro-Lyme, chronic fatigue syndrome, or any real neurodegenerative disease. I will again say and add that SSRI's, SNRI's, and pro-dopamine medications either failed to help me or even made things worse. I consider myself to have some peculiar form of depression, but, as I have mentioned before, it doesn't really manifest like standard (or atypical, for the matter) depression, because low mood and anxiety were never the initial or primary symptoms to begin with. The emotional detachment, in my opinion, probably goes beyond a simple case of depression, because there are no negative emotions in my mind anymore that would be a likely cause of it. Even for depression, my anhedonia seems extremely stubborn and severe, almost as if a neurological hiccup of some kind if occurring in my frontal lobes.

Traditionally speaking, I have always been a lover and heavy consumer of bread and carbs. In your opinion, could my depression-like disorder, in fact, be a rare and extremely insidious manifestation of Celiac Disease, or at the very least, bad gluten intolerance? OR, on the other hand, am I just suffering from unusually pervasive depression? I plan on getting tested within a few months, but I am very curious as to what you all have to say about my own experience in the meanwhile. Any thoughts, comments, or insights would be greatly appreciated. Thank you. :) 

 


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



Celiac.com Sponsor (A8-M):



TexasJen Collaborator

That is a crazy thing about celiac.  There are several hundred different symptoms and everyone seems to have a different combination.  It could be celiac.  Good for you for thinking of it!  Now get tested so you won't be left wondering......

Make sure to keep eating gluten while you are waiting for the testing. About the equivalent of 1 piece of bread per day.  

And, just curious, why do you have to wait several months to get tested? the preliminary testing is a blood test (but you do need to be eating gluten for 8-12 weeks prior)

let us know how it goes!

GFinDC Veteran

Hi David,

Welcome to the forum! :)

Here is a study link looking at neurological effects associated with gluten sensitivity and celiac disease.  There are many symptoms of celiac disease, and also a higher chance of schizophrenia and other conditions like T-1 diabetes. rhuematoid arthritis etc.

Open Original Shared Link

Here is a link to a thread about some mental symptoms people have suffered.  There are more threads on the subject on the forum.

Anger, Quick Temper, Depression

https://www.celiac.com/forums/topic/34917-anger-quick-temper-depression/

There is a condition called gluten ataxia that affects some people with celiac disease where the antibodies attack cells in the brain.  It can cause difficulty walking and coordinating muscle movements.  So there is definitely a link between gluten ingestion and possible brain affects.

I am currently taking the NAMI family to family class so have a vague understanding of some condition symptoms.  It sounds like you are describing bipolar disorder?  It's good you are getting treatment for it.  I was depressed for a time before going gluten-free myself.

Open Original Shared Link

Common risperidone side effects may include:

  • headache;

  • dizziness, drowsiness, feeling tired;

  • tremors, twitching or uncontrollable muscle movements;

  • agitation, anxiety, restless feeling;

  • depressed mood;

  • dry mouth, upset stomach, diarrhea, constipation;

  • weight gain; or

  • cold symptoms such as stuffy nose, sneezing, sore throat.

Here is an article about wheat and schizophrenia.

Open Original Shared Link

If you want to try the gluten-free diet,we can help with pointers on getting started.  But the best thing to do is stay on a regular gluten eating diet until all celiac testing is completed.  The testing involves taking blood samples to check for gluten antibodies, and usually an endoscopy later to check for intestinal damage.  There is no testing for GS (gluten sensitivity) yet.  Sometimes we call that NCGS, or non-celiac gluten sensitivity.

I suggest staying on your regular medication until your doctor says anything different.

Awol cast iron stomach Experienced

Welcome

I can get a whole basket of symptoms with my gluten and other food intolerances in addition to gi, cognitive, nerve, mood.

As a woman somehow my autoimmune and nerve issues if I'm not fully in remission  is tied to flares and hormones of my cycle.

I lose my balance easily after consumption of cc and regularly spent years catching my wrist watch on walls and door  frames.

So yes this can be worth investigating for you. Gluten and other foods etc can inflame the brain in my opinion.

Good luck on your journey.

 

Ennis-TX Grand Master

......de-ja vu sorry for the amusement. I find it very enlightening to find someone else with Asperger here. And yes it is possible for the neuro symptoms to cause depression, for me it was a combination of depression, anxiety, fog, etc. It got worse right up before my dia. thought I was dying. I also get gluten ataxia issues with it where it caused me brain damage and loss of feeling in my hands and feet.

Gastro wise I never really noticed it much as I thought only having a bowl movement every 3-11 days was normal. I also thought puking a bit of your food up every other meal was normal. I assumed most of the issues  I had were "normal" as I had them most of my life and they slowly progressed.
 

Many of the issues with the brain, neuro side of it can be a combination of antibody reactions and nutrient deficiency caused by damaged intestines. I can give you a few supplements I swear by that work wonders with them. Look up these and perhaps invest in them along with getting tested for celiac like ther others have mentioned
Liquid Health Stress & Energy 1tbsp 3 times a day
Liquid Health Neurological Support 1 tbsp 3 times a day
Natural Vitality Calm Magnesium start with 1/4 tsp a day and slowly over the period of a week ramp it up to the full dose. This can cause some gastric issues if you take the full dose straight

Love to chat more but I am a bit preoccupied thought wise with some things.

  • 2 weeks later...
Xgth Newbie

Thanks for your input, everyone! :) I will get tested soon enough for this condition, and I will definitely update you all when the results finally come in.

  • 4 months later...
ch88 Collaborator

I read this artical that you might find useful. 

Open Original Shared Link

Saint Johns Wort is an herbal antidepressant that is available without a prescription. 

Open Original Shared Link

There is some information that Celiac disease starts off as a sensitivity to dairy.  A lot of people on this forum are also sensitive to dairy, corn, other seeds/grain, caffeine, sugar or processed foods in general.

Headaches are linked to both Igg food sensitivities and anxiety disorder. It could well be that a lot of mental problems like depression are caused in part by food sensitivities.

Open Original Shared Link

 

 

 


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



Celiac.com Sponsor (A8-M):



festivus321 Rookie
On 10/11/2017 at 1:43 PM, Awol cast iron stomach said:

Welcome

I can get a whole basket of symptoms with my gluten and other food intolerances in addition to gi, cognitive, nerve, mood.

As a woman somehow my autoimmune and nerve issues if I'm not fully in remission  is tied to flares and hormones of my cycle.

I lose my balance easily after consumption of cc and regularly spent years catching my wrist watch on walls and door  frames.

So yes this can be worth investigating for you. Gluten and other foods etc can inflame the brain in my opinion.

Good luck on your journey.

 

Great post.   I think it can't be stressed enough that, while this is a website for Celiac's, "other food intolerances" can cause the same effects as gluten intolerance.   My blood panel  came back as "possible but unlikely for Celiac's," but the test showed some sort of  abnormality (weak positive for tTG IgG.)  After realizing my gut was getting worse when I stopped eating gluten and dairy, I realized I might be soy intolerant, since I replaced cow's milk with soy milk (which I was consuming almost  daily with my morning cereal.)   So to the OP, keep an open mind and certainly listen to the doctors, but also listen to your own body.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

    2. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    3. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    5. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,874
    • Most Online (within 30 mins)
      7,748

    Jen J.
    Newest Member
    Jen J.
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • SamAlvi
      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.