Jump to content
Celiac Disease FAQ | This site uses cookies GDPR notice. Read more... ×
  • Sign Up
0
thegron

First Post :) Gluten Associated Neurological Symptoms

Rate this topic

Recommended Posts

Hi all,

My first post here.

First, I tested negative for Celiac Disease. I do think, however, that I am sensitive to gluten nonetheless. I have little to no G.I. symptoms. All of my symptoms are neurologically based. The main ones are...

-Horrible brain fog (this is the main symptom)

-Occasional migraine-like headaches

-Fatigue

-Dysautonomia (chronic orthostatic hypotension)

-Loss of hunger (when its really bad)

-Dizziness

I've decided to start on an elimination diet and eat plain rice for a week or so. Then hopefully I'll see some improvement.

I'm just wondering if anyone else out there has experienced a similar set of symptoms and could tell me their story. I'm wondering if this is 100% curable and how long it might take to get appreciably better.

Thanks for your time and consideration.

Share this post


Link to post
Share on other sites

Hi all,

My first post here.

First, I tested negative for Celiac Disease. I do think, however, that I am sensitive to gluten nonetheless. I have little to no G.I. symptoms. All of my symptoms are neurologically based. The main ones are...

-Horrible brain fog (this is the main symptom)

-Occasional migraine-like headaches

-Fatigue

-Dysautonomia (chronic orthostatic hypotension)

-Loss of hunger (when its really bad)

-Dizziness

I've decided to start on an elimination diet and eat plain rice for a week or so. Then hopefully I'll see some improvement.

I'm just wondering if anyone else out there has experienced a similar set of symptoms and could tell me their story. I'm wondering if this is 100% curable and how long it might take to get appreciably better.

Thanks for your time and consideration.

Hey man. Im new here too and dont know if I have celiac, so i cant really say. But my symptoms are mainly brain ones as well. I have these on your list:

-Horrible brain fog (this is the main symptom)

-Fatigue

-Dysautonomia (chronic orthostatic hypotension)

The brain fog went away after about 2 days gluten free. The fatigue as well, in a way. Leaves an empty feeling. Havent tested the last. You can read all my symptoms in my threadh in the pre testing category. See if you see other similarities.

Good luck! :)

Share this post


Link to post
Share on other sites

Have you considered getting testing for celiac first, before stopping the gluten? It would save having to do a challenge and potentially make yourself very ill later on :)

Share this post


Link to post
Share on other sites

Hey man. Im new here too and dont know if I have celiac, so i cant really say. But my symptoms are mainly brain ones as well. I have these on your list:

-Horrible brain fog (this is the main symptom)

-Fatigue

-Dysautonomia (chronic orthostatic hypotension)

The brain fog went away after about 2 days gluten free. The fatigue as well, in a way. Leaves an empty feeling. Havent tested the last. You can read all my symptoms in my threadh in the pre testing category. See if you see other similarities.

Good luck! :)

Hey Johan,

Thanks for the reply. It's great to know that someone else has experienced the same symptoms. The dysautonomia is especially rare it seems. That's great that your brain fog lifted after only 2 days gluten free! I am 5 days in and I actually feel worse. I think I could be going through withdrawal and I'm just hoping that I'll feel better within a week or two. I guess it just depends on the person. I'm very envious ;)

Have you considered getting testing for celiac first, before stopping the gluten? It would save having to do a challenge and potentially make yourself very ill later on :)

Hey Mushroom,

Not to be rude, but I mentioned in the very beginning of my post that I had been tested for Celiac Disease and it was negative. I have very few GI symptoms and when I do, they are all upper GI symptoms. The majority of people who are intolerant to gluten do not have "true" Celiac Disease. Some people, like Johan and I, have purely neurological symptoms. And it absolutely sucks... :angry:

Share this post


Link to post
Share on other sites

Hey Johan,

Thanks for the reply. It's great to know that someone else has experienced the same symptoms. The dysautonomia is especially rare it seems. That's great that your brain fog lifted after only 2 days gluten free! I am 5 days in and I actually feel worse. I think I could be going through withdrawal and I'm just hoping that I'll feel better within a week or two. I guess it just depends on the person. I'm very envious ;)

Hey Mushroom,

Not to be rude, but I mentioned in the very beginning of my post that I had been tested for Celiac Disease and it was negative. I have very few GI symptoms and when I do, they are all upper GI symptoms. The majority of people who are intolerant to gluten do not have "true" Celiac Disease. Some people, like Johan and I, have purely neurological symptoms. And it absolutely sucks... :angry:

I'm sorry, I don't know how I missed that :( since it was the first thing you said :rolleyes::wacko:

Yes, the neurological symptoms seem to cause the most problems, both in diagnosis and length of time it takes to recover, as well as just being generally suckey!! I am glad you put the "true" in quotes because there is still so much unknown about celiac. I have always said that the way it is used today just describes one form of gluten intolerance. :P

Share this post


Link to post
Share on other sites

Hi,

here's a list of what was causing my symptoms.

migrains, brain fog - rice alergy, wheat/rye alergy - including inhaled wheat around bakeries, pizza places, I don't need to eat my allergens to get sick. Even someone else warming up rice gave me two days of bad migrain.

brain fog, orthostatic hypotension - yeast overgrowth and glutenning

fatigue - anything mentioned above plus nightshades and low blood pressure

loss of hunger - glutening and something else I still can't figure out - seems like I only get this when my thyroid is hyperactive which usualy happens a couple of days after gluten exposure.

Hope it helps a little. I know how hard it is to find what's causing which symptom. It took me about a year to figure the rice alergy since most of the rice products can also be cc with wheat so I always blamed cross contamination.

Share this post


Link to post
Share on other sites

Hi,

here's a list of what was causing my symptoms.

migrains, brain fog - rice alergy, wheat/rye alergy - including inhaled wheat around bakeries, pizza places, I don't need to eat my allergens to get sick. Even someone else warming up rice gave me two days of bad migrain.

brain fog, orthostatic hypotension - yeast overgrowth and glutenning

fatigue - anything mentioned above plus nightshades and low blood pressure

loss of hunger - glutening and something else I still can't figure out - seems like I only get this when my thyroid is hyperactive which usualy happens a couple of days after gluten exposure.

Hope it helps a little. I know how hard it is to find what's causing which symptom. It took me about a year to figure the rice alergy since most of the rice products can also be cc with wheat so I always blamed cross contamination.

It does help Pac, thank you. I'm sorry that you have so many intolerances. Hopefully, rice isn't an issue for me. I think it is uncommon to have a rice intolerance so I'm crossing my fingers. I'm just praying that what I'm going through right now is gluten and/or casein withdrawal.

Share this post


Link to post
Share on other sites

YES. I hate it. I hate it all.

I react this way to fructose, so I eat only meat/fish/eggs and plain rice. PM me if you want to talk about the diet. It's more varied than that and a little tricky to get the hang of, but solves all my problems when I do it right. It's been pretty great.

Except the dizziness on standing up. No idea why that's happening and would love to know.

Share this post


Link to post
Share on other sites

YES. I hate it. I hate it all.

I react this way to fructose, so I eat only meat/fish/eggs and plain rice. PM me if you want to talk about the diet. It's more varied than that and a little tricky to get the hang of, but solves all my problems when I do it right. It's been pretty great.

Except the dizziness on standing up. No idea why that's happening and would love to know.

that could be orthostatic hypotension...?POTS are you dehydrated, too little salt, or protein?

Share this post


Link to post
Share on other sites

Hi, I had all of your symtoms and after going gluten free, most were significantly lessened as to barely exist at all. I still experience occasional arthritic, nerve, and muscle pain, but I'm working on cutting all grains out completely to see if that helps. I also still get mildly dizzy but I've only been gluten free for about 3 weeks now so I'm hoping that with time, all my symptoms will subsisde. Good luck with your elimination diet!

Hi all,

My first post here.

First, I tested negative for Celiac Disease. I do think, however, that I am sensitive to gluten nonetheless. I have little to no G.I. symptoms. All of my symptoms are neurologically based. The main ones are...

-Horrible brain fog (this is the main symptom)

-Occasional migraine-like headaches

-Fatigue

-Dysautonomia (chronic orthostatic hypotension)

-Loss of hunger (when its really bad)

-Dizziness

I've decided to start on an elimination diet and eat plain rice for a week or so. Then hopefully I'll see some improvement.

I'm just wondering if anyone else out there has experienced a similar set of symptoms and could tell me their story. I'm wondering if this is 100% curable and how long it might take to get appreciably better.

Thanks for your time and consideration.

Share this post


Link to post
Share on other sites

that could be orthostatic hypotension...?POTS are you dehydrated, too little salt, or protein?

It's totally orthostatic hypotension. I only get it after my evening glass of wine, but that has never happened before. I checked and alcohol should only be cause if I'm overdoing it, but if anything I'm drinking less than a whole glass. Nonetheless, could be causing dehydration.

I have iron overload and eat way too much protein (not by choice), so dehydration from the alcohol seems likeliest. I'll check with the doctors at Mayo next month just to make sure it isn't something more serious...!

Share this post


Link to post
Share on other sites

It's totally orthostatic hypotension. I only get it after my evening glass of wine, but that has never happened before. I checked and alcohol should only be cause if I'm overdoing it, but if anything I'm drinking less than a whole glass. Nonetheless, could be causing dehydration.

I have iron overload and eat way too much protein (not by choice), so dehydration from the alcohol seems likeliest. I'll check with the doctors at Mayo next month just to make sure it isn't something more serious...!

How is your blood level of protein? eating it is not the same as absorbing it....?digestive enzymes? the wine may be the "straw/camels back" routine...end of day, relaxed from the wine...etc. perhaps try the wine at a different time of the day?

Share this post


Link to post
Share on other sites

Hope you are feeling better! My symptoms were mostly nuerological as well. In retrospect I did have some GI upset...thought it was the green chili suace! ( I live in baja, Mx.)But not classic celiac disease GI problems.

Brain fog almost gone after six months. Just in the morning now. Nueromuscular problems better ...75% or so. It IS discouraging that they persist to some degree. I went all the way to cerebellar ataxia...could hardly walk. Thought that I had MS. So I am much better now and have accepted that it takes a long time to recover . I was a windsurfer, and have to leave it. but I can sail in my 25' sloop in light winds. It is a matter of accepting what you CAN do!

Remember that what is called celiac disease is long standing condition, tissue changes due to the inflammatory effects of the auto immune response. Mine was undiagnosed for 15 years... I have Type 1 diabetes also, and symptoms were attributed to that. It is clear that there are huge ranges in sensitivity and types of reactions. Hence cross allergies(e.g. milk for some) and variations in severity. Sadly, It is increasingly clear to me that many gluten-free products are not, and restaurants are very dangerous to me . Oil seems to transfer allergens even if breading, etc is gluten-free...maybe even cutting boards? I get a nuerological slam when I eat out now...I seem to be getting more sensitive.

Fortunately I like to cook, and my wife likes gluten-free food. We focus on a natural diet, as in no processed food.

Tortillas, beans, rice, fruit, fish and a little meat kept people healthy for thousands of years. gluten-free cake, cookies, mixes are Frankenstein foods to me, edible food like substances, not food. They are miracles of chemistry...but who knows what those chemicals do to you in the long run? Why trust the  food science industry that got me into trouble in the first place? I can't take the chance.

Good luck!

Ed

  • Upvote 1

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
0

  • Top Posters +

  • Upcoming Events

    • February 27, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • March 24, 2019 Until March 27, 2019
      0  
      NEW ORLEANS GOURMET GLUTEN-FREE mini GETAWAY    March 24 ~ 27, 2019   We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun.  We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.   Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.   Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.      This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before.  Check out our website for the complete itinerary and cost.    Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.      If you have any questions just give us a call at 410-939-3218.  Bob & Ruth info@bobandruths.com (410) 939-3218
    • March 30, 2019 Until March 31, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
×