Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

First Post :) Gluten Associated Neurological Symptoms
0

13 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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! :)

0

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 :)

0

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:

0

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

0

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.

0

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.

0

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.

0

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?
0

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.

0

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...!

0

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?
0

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

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

  • Forum Statistics

    • Total Topics
      104,365
    • Total Posts
      920,553
  • Topics

  • Posts

    • Just a quick one to say I got a diagnosis of celiac disease today. I know in the past it's been helpful for me to know the outcome for other folk, so thought I would update. The moral of this story is even with a VERY borderline blood test it's worth persisting. thanks for all the help Sue 
    • Well, I am stressed to the max. I just spent 3 days in the hospital with D and stomach pain, dizziness, chest pain, generally unwell. Then another trip to the ER on top of that. My protein was low and my RBC and hemoglobin dropped below normal in 3 days. Not terribly low, but below normal. I also had metabolic acidosis which still confuses me. I usually eat every 2-3 hours despite it causing pain to keep my energy up and was unable to eat that frequently in the hospital. I usually carry protein with me and had been taking liquid iron which I stopped a few weeks ago because my new endo is not a fan of iron supplements. As soon as I got home from the hospital I started with my protein drinks and blackstrap molasses for iron.  I now have bilateral mild pleural effusions and a nodule on my left lung, which hopefully is nothing, but was not there on a CT back in March. In addition, my left adrenal gland, which also appeared normal in March, is calcified and the report indicates this is most likely due to a previous bleed or infection. My colon appears tortuous (whatever that means) and we are waiting on colon/endo biopsies. I have been gluten-free since March except for cc so expect the biopsies to again be negative.  My primary care is useless. I am in the process of getting a new one I will see on the 7th but need the current one to fill out FMLA paperwork because I both physically and mentally need time to recover. I will have to go off of payroll for 2 weeks but I think I need to. I called the primary's office today to discuss the hospital tests which she does NOT have yet and to ask if we should/could start a low dose of prednisone because my body is attacking itself. My thyroid on ultrasound is also abnormal though my bloodwork thus far is normal. But it hurts on that side. The only reason the ultrasound was ordered is because I asked for it in the first place. The only reason I have started seeing an endocrinologist is because I found one myself. Anyway...I broke down in tears on the phone eith her today and she told me I was having a "manic episode". I have no history of mania. I only recently started taking xanax to help me cope with the stress of being sick. I was not sick until I did this stupid gluten challenge over the winter. My mother was in town and spoke with the doctor on the phone as well who was trying to get my mom to take me to a psych hospital. She also threatened to send the police to check on me. My mother assured her I was in no danger and we hung up the phone in complete shock. Admittedly, I was in tears when I called her and probably sounded like a fucking mess. But I believe I referenced the dropping iron, protein, fluid near lungs, enlarged thyroid and attacked adrenal gland then literally said "my body is attacking itself and I need help" to which she said, "I think you are manic". Lovely. If I was a mess before that phone call it was 10x worse when we hung up.  Anyway, this is the first night it has been extremely difficult to sleep. I admit my thoughts about my odd symptoms keep me up often recently. I mean, who the hell bleeds from or gets an infected adrenal gland?! I am sure it was another time I begged my primary for help. On a side not, the NP at the ER told me the primary should be putting these pieces together and communicating with my other doctors better. He then stated that he used to go to the same practice but left because the practice got too big and like a business. So I got some validation from that chat.  A melatonin or a .25 xanax usually does the trick for me to sleep but I am so disturbed about my interaction today, stressed at my health, stressed that my ex has our son so much because I am always sick (bless him for coming through), stressed that I have to go back to this awful doctor because I will need the FMLA paperwork before I see the new doc on the 7th.  8 months ago, I took a multivitamin when I remembered it and that was it.  End rant. Maybe now that it is off my chest I can finally sleep. 
    • Hi DKH0614, I use aspirin, Pepto Bismol, and peppermint tea or Altoids peppermints.  Pepto Bismol has a soothing effect on the gut.  Pepto Bismol also has aspirin in it.  Peppermint is helpful for relaxing smooth muscle tissue and getting gas out of the stomach. As per KarenG, you may be reacting to dairy.  Dairy has a sugar called lactose in it that some people with celiac have a hard time digesting.  You could try avoiding dairy for a few weeks to see if that helps.  Or try taking lactaid type pills when you eat dairy. It doesn't take very much gluten to cause an immune system reaction.  So it is important to avoid even traces of gluten if possible.  The stuff is hard to avoid sometimes if people around you don't understand how much a small amount of it can affect your body. Let us know if we can help with any  more questions, or if you have concerns we haven't addressed. And welcome to the forum! Also, if you subscribe to the thread (notify me of replies) you'll get an email when people respond to your thread.    
    • After a year and half, if you are eating gluten-free, you shouldn't be having pain from Celiac.  Perhaps you need to find out what is really causing your issues?  Dairy/ lactose is an obvious first place to look.
    • Hi! I am 15 and have been diagnosed with celiac disease for about a year and a half now and I am woundering what do some of y'all use to relive some of the abdominal pains that come along with celiac/gluten allergies?  ( Ibuprofen,  Tylenol, etc.) 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,440
    • Most Online
      1,763

    Newest Member
    Cygnusx1
    Joined