First Post :) Gluten Associated Neurological Symptoms

[thegron]

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.

[JohanJohan]

  On 2/10/2013 at 8:03 PM, thegron said:

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!

[mushroom]

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

[thegron]

  On 2/11/2013 at 12:50 AM, JohanJohan said:

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

  On 2/11/2013 at 2:52 AM, mushroom said:

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...

[mushroom]

  On 2/11/2013 at 11:34 PM, thegron said:

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...

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

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.

[Pac]

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.

[thegron]

  On 2/12/2013 at 12:25 AM, Pac said:

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.

[Chaff]

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.

[frieze]

  On 2/13/2013 at 2:46 PM, Chaff said:

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?

[lisa74]

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!

  On 2/10/2013 at 8:03 PM, thegron said:

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.

[Chaff]

  On 2/14/2013 at 4:15 PM, frieze said:

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...!

[frieze]

  On 2/14/2013 at 10:45 PM, Chaff said:

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?

[Ed in Baja]

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